June 2020 chemo starters

[Tabs]

Hi Tara, 

I definitely bloated with the steroids in cycle one but I think I lost the weight by some time in week 2 (or maybe I just got used to it). I'm just about to have take 2 of trying to fit a port followed by cycle 2, hopefully using the port. My hair started falling out on Saturday, nearly 3 weeks in. I was a bit low as I'd just begun to think that maybe it won't happen to me. At least it means the chemo is working. Am nil by mouth now until the port procedure. Hopefully I won't be too nauseous this time, I'm definitely going to have all the drugs they give me, bloatedness or not. I hope you all have a nice time today. 

Tabs

[ttyler]

Hi Lam, my head is not too sore just a little sweaty lol 😝  

 Don’t worry about looking like an alien I am also there! Strangely enough I still have to shave my legs and under arms.

 Had anyone else swollen from the steroids?

 Hope everyone starts to feel well soon.

 Sleep well.

 Tara xx

[Horseylass]

Hi lam, 

So sorry you’ve been feeling so rubbish. You really should contact your team as they will be able to help you with things. They can give you different drugs to make things easier for you. You shouldn’t need to suffer so badly. So sorry the wigs were no good. 

I felt really grotty this morning but my sister in law who has been on chemo for a long time, not breast cancer, tells me it is my body reacting to coming off the steroids last week. I do feel much better this evening and I managed a bit of a walk with the dogs and I think that helped. 

I think I’m going to go for cutting my hair off tomorrow as it’s going to start coming out soon. Im sure I’m going to look like one of those aliens with a big bulbous head! 

Take care everyone. xx

[lam477]

thank you Ann I will let them know as don’t want to feel like that every time xx 

[ann has cancer]

Hi Iam477 please tell them ebfore your next treatment, they can stop all the sickness, they did for me and it allows me to sleep and start eating better.  Thinking of you aNN

[lam477]

oh Tara I hope it’s not too sore for you.  
I didn’t call the oncology team and just pushed through it all.  I’m with you on the tiredness through nice never felt this tired before.  
Work have been amazing and have told me that I don’t need to go back until January (on full pay) but I’ve had 5 weeks off and I’m getting bored.  They have thankfully agreed that I can go in as and when I feel like but on light duties.  I will just have to see how it goes.

ive been having a lot of light headed ness lately but apparently my calcium levels are really low at 2.1 so I’ve been put on adcal to try and get the levels back up.

hope everyone is ok x 

[ttyler]

 

[ttyler]

Hi lam,

 I am sorry that you have not been feeling well. Have you contacted your team to tell them this? They may be able to sort you out next time around with better sickness meds etc. I have my second round in Thursday and are dreading it. I have not felt too ill but the last couple of days have felt really tired. My oncologist did say that sometimes the first chemo is the worst and it gets better as you go on. Hope this is how it is got you.

 I have not worn my wig out yet. Put my cap on to go for a little walk around the block yesterday and today, although this afternoon I had a lie on the bed to watch Peaky Blinders and when I got up I felt bald patches. My husband won’t shave it any shorter as he says it will be stubbly and may become painful. I will upload a pic to show you.

 Sending love to everyone  

 Tara xxx

[lam477]

Sorry not been on for a while.

happy belated birthday horseylass.  Tara your wig looks fab.  My hair is starting to come out but not enough to shave it yet thankfully.  My wigs arrived and they have gone straight into the bin.  I thought I’d have a couple of different ones but omg 😮 I look like I’m in drag so I think I’m going to embrace the boldness and just wear the beanie hats instead.  When did people start to really notice their hair was coming out? 
I hope everyone is coping with their sessions of chemo.  I was so poorly after my first one on 18th and so I’m dreading the next one on 9th July I’ve never felt so tired, drained and sick but thankfully since about Wednesday this week I’ve been feeling better.

i promise I will try to come on more as you are all so supportive. 

i would post pictures of the wigs but I’m worried you will all get a stitch laughing lol 😂 

everyone enjoy your weekend xx

[ttyler]

Morning ladies,

 Thank you Ann for your advice, I hope I too am the same as you.

 Hope everyone is feeling okay today. The weather here is better. Warmer but windy too if you know what I mean?

 My shirt hair has started falling out now. I feel

like I have been to the hairdresser as I woke up with tiny pieces stool to my face. I am like my dog shedding now 😝  

 Have a nice day all

 Love 💕 Tara xxx

[ann has cancer]

Tara I haven't found the 2nd or 3rd any harder, possibly a bit easier, perhaps because it's jus more familiar.  Hope that helps.  Love aNN

[ttyler]

Thanks ladies for the lovely comments about my wig. Although I have to admit in the house I prefer my shaven head. It is so much cooler. Watched my boys play on their scooters in the culdesac today and just looked my cap on.

 Sorry to hear you were sick yesterday but glad you feel better today. I have felt so tired even had a little nap earlier. Beginning to feel worried about my next cycle on Thursday now. Scared it may be worse than last time. I also get really anxious about the cannula. I hate the way it feels in my hand. Think I need to grow up a little. Just want his to hurry up and all be over with. 

 Glad I have the support if such lovely ladies. Thank you 😊  

 Tara x

[cubot]

Tara that wig is fab - you look amazing! 

Was sick three times yesterday but slept better than expected and feeling ok today cross fingers! Been enjoying the cooler weather and chilling, hope everyone else is having a relaxing weekend too.

xxx

[ann has cancer]

That wig looks amazing, you would never know.

[ttyler]

Morning ladies,

Thank you Horsrylass!

 Hope everyone is doing okay today. The weather here is a lot cooler which for me is lovely.

 Hope you are feeling okay after your chemo yesterday Cubot and are not too sick this time. That goes for all you other beautiful ladies that may of had chemo recently and I have left out. Please know I am always with you, even though I don’t always remember x

 Have a good Saturday!

 Lots of love 💕  Tara xx

[Horseylass]

How fab do you look Tara? Beautiful. 👍🏻👍🏻👍🏻🥰

[ttyler]

Thanks Shi,

Mind you I prefer my short hair around the house in this heat. Will wear the wig when I go out.

Night night x

[Shi]

Tara ❤️ Stunning 👍💕💕✨✨Shi xx

[ttyler]

 me with my wig on x

[cubot]

Hi all

Tara, thanks so much for the photos the one with your kids too made me smile so much!!

Cecilia, so sorry to hear about your hand, get well soon! I'm keeping a photo diary (lazy person's scrapbook!) and find it helps.

There were lots of posts to catch up on with everyone's news so just to say I'm thinking of you all but feeling a bit sick from chemo today so going to stop looking at the screen now.

xxx

[Tabs]

Hi All, 

My port insertion was aborted today as they weren't 100% sure it was going where it was meant to so it's been rescheduled for first thing Monday in the main building where they'll have full support if there are any complications. On the plus side, whilst under observation afterwards I spent half the day in an air conditioned room to myself with nice cotton sheets. I later discovered the roof garden whilst I was killing 30 minutes waited for a chest xray which was nice (and meant I could take my mask off). I also found out by the by that I'll almost certainly be having radiotherapy on the whole chest cavity and that my bloods are back up to normal which means that my chemo on Monday should be able to go ahead as planned which is good (assuming my blisters don't get infected). I wish I'd thought about a scrap book, that's a really nice idea. I hope that you're all on track for a good weekend, Tabs xx

[ttyler]

Hi Cecilia,

 If you look above the text box there is a photo icon if you press that then you can either take a photo or upload one from your phone.

 I started to write a diary of how I felt but to be honest with home schooling and not feeling too unwell I have not written in it since the first few days after chemo. I did however take pics of the children cutting my hair yesterday and also kept a lock of my old hair so will add these to my diary as a kind of scrap book. Fab idea

 glad to hear your hand is better and you have a good network of support around you. It makes all the difference. In fact not sure if anyone else has found the same but the people you thought were your closest friends before diagnosis seem to dwindle and those who I never really had much time for have been the best support I could ask for? You should never read a book by its cover I say!

 Thank you for the nice comments ladies. They make me feel better about myself. 

 Hope you are all enjoying the beautiful weather I am currently sat in the conservatory with all windows open and fan blasting at me. Lovely!

Lots of love 💕  

Tara

[cecilia]

Thank you everyone 

you are really rocking that short hair cut Tara 

I was Exactly the same hair was all knotted 

and difficulty to comb looks much better now that it’s off 

hand is still in bandage definitely not as painful as it was before 

my husband is here doing everything and friends and Neighbours have great 

Tabs I’m getting picc put in on the 15th of July

hope they give you appointment soon  

I feel lucky that am able to eat

in fact I feel quite well and I hope it’s the same for everyone else 

I m very glad that we are all getting the best out there 

keep well everyone and stay safe xx

How do you post pictures on this forum 

mum trying to keep a scrap book 📖 is anyone else doing the same?

[ttyler]

Hi Ann,

Thanks for the advice. I am trying to drink plenty as my whole body has swollen from the steroids I think. Hope I will be okay to have my second round next Thursday.

 How are you feeling Ann after your chemo? Hope your nausea is under control.

 Thank you to all of you that have said they like my hair. I’m not sure I like it but is so much cooler. My husband thinks it looks great but he always says that lol 😝  

 I will take a pic with my wig in when it cools down a little later and post on here.

 My oncologist was suppose to be phoning at 11 to talk to me about my chemo but as of yet has not called. Think everyone is so busy at the moment with chemo only just starting back up again in my local hospital. I’m not Poorly anyway so are not too fussed.

 Have a nice afternoon ladies!

 Tara xx

[ann has cancer]

It really suits you, well done.  I have my 3rd chemo today and my blood pressure was a bit low because I had not been drinking enough water so keep the fluids up girls.  I check by pressing a finger into my cheek and seeing how long it my skin takes to come back to shape.

[Horseylass]

Oh Cecilia I hope you heal ok, it’s so hard to not hurt yourself.

Tara, you really suit that cut. My hair is so long due to lockdown I’m hoping to cut it short before it all goes. 

I had a lovely birthday, thank you all for your kind wishes. 

Take care everyone. xx

[ttyler]

 

 my kids got involved too! X

[ttyler]

Morning everyone,

Little cooler here today after the heatwave yesterday.

 Well I finally took control yesterday and got my husband to shave my hair to grade 3. I have really thick hair and although it was coming out in clumps I had no bald patches but could not stand it falling out anymore. I was told by bc nurse not to mess with it too much but how can you sit there with knitted hair? I washed it and brushed it and my kids were picking it off me and the floor. Even the Dyson struggled to get it up 😝 I feel really relieved today like a weight has been lifted off my head! I will send a pic and then one of me in my wig later. I am happy to just be bald at home at the moment. Have got some grey hairs though! My husband was shocked as he has never seen my natural colour.

 I am sorry to hear about your accident Cecilia hope you are okay. We can damage ourselves more easily on chemo. 

 Tabs I brought some converse ready for treatment as well fitted shoes were recommended. Have to say I was worried about blisters as always get them when wear converse, but touch wood been okay so far.

 Hope everyone has a nice day and feel as well as you can.

 Tara xxx

[Tabs]

Hi Cecilia, 

You poor thing, I hope you heel quickly. I always feel so stupid when I hurt myself like that but there's nothing you could have done to prevent it. Have you got anyone to help you at home? I hope you get better soon. I got a pair of blisters on my heals yesterday wearing my new trainers which was really stupid, I should have known to wear them in with plasters. I'm just waiting to be called in to have my port fitted which is quite exciting, it should be ready for cycle 2 on Monday (assuming my blisters don't get infected in the meantime). I hope everyone stays accident free for a while.

Tabs

[cecilia]

Morning you lovely ladies 

happy birthday horseylass 

thanks the wig advice I think I'll just keep my bald head I'm a bit shut of wigs 

the transformation will be too great from natural Afro to flowing European shoulder length 

i trip over yesterday while trying to stop my dog from killing a squirrel 

the skin on my palm came off got in touch with my care nurse and was advised to go to 

the hospital 

i was seen by medical staff very quickly who cleaned the wound and dressed it 

im back to square one as it my dominant hand almost impossible to wash myself and I'm worried about the chemo infection 

in regaurds to side effects apart from hair loss diarrhoea on the day of infection I've been quite fine 

im eating more than normal 

be careful out there 

sending hugs to everyone 

[cubot]

Happy Birthday Horseylass! 🎉 Sounds like proper animal magic over there 😊 We have a pond so I've learnt a LOT about dragonfly and damselfly mating and hatching habits (!) over the past couple of months, who needs Netflix eh?!

Anna - welcome and sorry to hear you've been having a tough time. I've got my second chemo tomorrow (if my neutrophil levels are up - cross fingers they are as it's been delayed a week because they were under 1 last week 😕) and hoping I'll be less sick than last time. Regular metaclopramide was definitely helpful for me. 

My jazzy 80s vintage scarves arrived and I enjoyed wearing a very rainbow coloured one yesterday when I went out in the car! Debating whether to wear one to chemo tomorrow or just rock the almost bald head...depends on how hot it is I think.

Saw this news yesterday: https://www.bbc.co.uk/news/uk-england-kent-53170058 hopefully will encourage people to go to their doctor with any concerns and not be put off by COVID.

Keep cool everyone xxx

[ttyler]

Hoerseylass,

we have chickens as well as a dog. The farm bring eggs into School each year just before Easter so that the children can watch them hatch them the staff take them home. This is our first time of having some in fact I got them the day I was diagnosed. My little boy is in year 2 and he watches them hatch and now looks after them at home. It’s been lovely to watch them grow from babies to hens.

 I’m sure my two would love a horse too.

i had one as a child but with football swimming and everything else we just would not have time.

 Tara xx

[Horseylass]

Thank you all for your kind wishes.

Ann my animals are 2 dogs, 2 house cats, 9 feral cats, 3 horses, 100 sheep and lambs, ducks and chickens. We have a farm so lots of animals. It’s madness but lovely. 

[ann has cancer]

Happy birthday Horseylass, love the idea of a wild day with your animals, assume horses.

[Anna45Anna]

Hi Butler10,

thanks for your reply. The whole thing does mess with your head a bit, doesn’t it? I hope after completing one cycle I’ll have a better idea how to get through the next time. Take care, and here’s hoping Saturday comes soon for you. 

Anna

[Anna45Anna]

Happy Birthday, Horseylass. Hope you feel good for the day and can enjoy something nice (to do or eat). 😛

Anna

[Butler10]

Hi anna45anna   Hope your day improves.  I had my 2nd chemo last Thursday.  As soon  as I got home  I had some think light to eat then took a sickness  tablet and that seemed to help. My down side is the steroids and the injections. They hv made me feel more down this time. But hopefully by sat is when I start feeling my self.  We all seem to suffer differently  but the lovley ladies on here all give out  good advise. They hv helped me on my off days x

[Butler10]

Happy birthday   x  have a good day as best you can.  X

[ttyler]

Morning ladies,

Hope you are all feeling okay today.

Happy birthday Horseylass 🎂 you definitely have the nice weather if not the freedom to go out!

 Enjoy the sun everyone! Xxx

[ann has cancer]

Hi Anna, nice to have you on board. I was also quite sick on my first treatment, they increased my meds for the second cycle and it worked so don't hesitate to take the stronger pills, sleep and food is more important.  I did find that certain foods really helped during this time, banana's, chicken and rice and toast, my stomach just did not react to them so might be worth a try for you, hope it helps.  Hopefully you have passed the worst now and can doze during the heat of the day.  Take care and lots of love and hugs

Ann

[Horseylass]

Hi Anna, welcome to our little group. I too started my chemo on 23rd. I’ve been very lucky as I’ve only had very mild nausea and no vomiting but I have been taking the metoclopramide 3 times a day. The advice from all the girls here to eat little and often has really helped too. I hope you feel better soon, I’m not sure that this heat helps either although it is better than rain. 
The wig route isn’t for me but I have got a good selection of hats from hats4heads and I think I will us my husbands clippers before too long. 
It’s my birthday today so I plan to have a wild, self isolating day at home with my animals. 
I hope you all have as good a day as you can too.

xx

[ttyler]

Hi Anna,

Glad you feel better in the day. Sounding you some love 💕 and sunshine 🌞. Don’t know if you have Netflix but I have started watching this through the night. I am well into Peaky Blinders now! I also find that sleeping downstairs on the recliner helps me when I feel sick as you are not lay flat like in a bed. My little boy suffer with terrible reflux and we have had to lift his bed up onto two books at the top so that he is not lay flat. Also lying in your left side is meant to help!

 Also if anyone else is struggling to sleep I think there is an awake thread on this site. Think Shi mentioned it. That might be worth a go to chat to other ladies awake too. Make the time go quicker. I have to say I have met some lovely ladies and got some fantastic support since being diagnosed from this site and also from talking to people at my appointments or when having chemo etc. It’s really helping me.

 Tara xxx

[ttyler]

Hi Tabs,

if you don’t mind me asking, what part of the country are you from? The reason I ask is because I am from the Midlands and my hospital Russell’s Hall referred me to a place called Wills Wigs. Now I think that although you might not be in the area they may still accept your wig prescription from the hospital if you explain you are having chemo for cancer. Think you just have to fax it over. They have some lovely wigs with dark roots at the top. I brought my wig I have now from Trendco who are also really good but I am having my prescription one from Wills Wigs and they did not have my colour but had lots with dark roots, which is what I have gone for one with a darker root! It might be worth asking. Also like Shi has said there are lots of fun wigs out there too to be worn. Mind you in this heat I’m not sure I’ll even wear a wig when I go for treatment maybe just a bandanna or cap.

 Also for Ceilia , I spoke to Louise my friend yesterday she is a black lady too and she said all of her family mum, sisters and aunts wear wigs. I can find out the name of her supplier if you like? Will have to order by mail if you are not close but it is an option.

 Tara xx

[Anna45Anna]

Thanks for the reassurance. I’ve called the ward and they’ve advised me to upgrade to the next anti-nausea meds, Metaclopramide, already in my pharmacy pack. So I’m just trying to keep some breakfast down while it takes effect. Still on steroids too. So thankful for the fantastic care, but weepy after a bad night. Daytime seems to feel better - was the same yesterday morning. 

[Tabs]

I tried the wigs they'd ordered for me to try at the hospital when I went for my covid test yesterday. They were awful but they made me laugh a lot. The hair advisor is ordering me another couple to try on. I think that since chopping my long hair off for the cold cap, I've got used to having short hair so the wigs I'd chosen before were too long. I did have one short one but it was too blonde as my hair is much darker at the roots (which I had taken into account but obviously not enough). 

[ttyler]

Hi Anna,

welcome! And as Tabs has said definitely ring the ward. I am on FEC-T too. I had my first round on n the 11th June. I felt sick for the first 2/3 days but fortunately was not sick. I have anti-sickness to take for two days after treatment and domperidone to take when I feel sick. Had a bit of an upset tummy yesterday, hubby just took sample to hospital but I felt sick too so took the domperidone and touch wood have not been sick. They can tweak your sickness meds to make you feel better. I know you say you don’t like taking the tablets but chemo is hard enough as it is. I figured I would have anything that makes me feel as well as I can to help me through!

 My hair started coming out yesterday ladies, you ought to have seen my roots of my bleached blonde hair. Terrible! My wig is all cut and ready to wear now so might shave my head in the next couple of days.

 Hope everyone is feeling as well as they can today! Enjoy the sun 🌞  

Love Tara xxx

[Tabs]

Hi Anna, 

Sorry to hear that you're feeling rubbish, tired and hungry is a bad combo at the best of times without chemo thrown in. Definitely call the hospital now if you've been sick 4 times as it's really important not to dehydrate as you need stuff flushing out. They'll also be able to adjust your anti nausea medication so that it works for you. They'll definitely be able to do something.  Hope you feel better soon. Let us know how you get on. Good luck. 

Tabs

[Anna45Anna]

Hi all,

I’m Anna, and this is my first post. I started chemo on Tuesday 23rd, (FEC-T) for stage 2 grade 3 IDC with micromets in one lymph node. 

In general things have been manageable since diagnosis and surgery, but I am a bit of a mess this morning. Guess this is day 3. I have some fatigue, but awful constant nausea. I’ve continued to eat small meals and generally kept them down pretty well, but overnight I’ve been awake since 2am and vomited 4 times but nothing much there to vomit. With no sleep I am mentally losing the plot a bit and that’s what I fear most - dreading that this is my life for the next 6 months. 

I think I’ll call the ward helpline this morning and get some advice. Dread stepping up the anti-nausea meds but don’t want to start down a slippery slope.

Sorry to be a basket case on introduction 😖 

[Mai7]

Hi all, I’ve just discovered this app which is specifically to help with managing appointments, medication, monitoring side effects and how you’re feeling during treatment.  I put everything on a spreadsheet when I was going through treatment but this creates graphs for you and you can share how you’re doing with friends and family.  I would have loved it, it’s super geeky.  It’s on Apple only at present:

http://www.careology.health/ 

[ttyler]

Hi Horseylass,

I am glad to hear that you are okay. Remember I found eating little and often was best for me for the first couple of days. Drink plenty too!

 Hope you sleep okay.

Tara xxx