June 2020 chemo starters

[Horseylass]

Bless you Tara. It didn’t go too badly thank you.
I haven’t felt too bad since this morning.

I’m just about to have my tea so I’ll see how I go.

Hope everyone else is ok.

love to All. x

[ttyler]

Hi ladies,

Hope chemo went as well as it could for the ladies that were having it today. Been thinking of you!

 Enjoy your evening everyone 

 love Tara 😘 

[CactusQueen]

Dear Plum

I am so pleased for you, you seem to be coping fine. Thanks for being so inspirational.

Love CactusQueen 

[Plumblossom]

Hello ladies, old and new,

There are a lot to catchup with on this thread! Just wanting to give you a quick update on my experience, as I had my first chemo last Thursday (sand day as you, Lam?)

- the anti-sickness drugs seem working well, I haven’t had a sickness so far. It has made a huge difference, as I can eat and drink and function without being sick. It helps preventing weight loss too. So do ask your oncologist to give you the best anti-sickness drugs that you need before chemo.

- I gave cold cap a go. The first few minutes felt awful but the coldness and tension soon eased off, I actually felt fine with it. 

- on the third day post chemo, I had to start injecting myself. The needle is actually very fine, I didn’t feel pain at all. Just poked it through my fatty skin, pressed it down and it was done. Luckily I haven’t had headache or muscle pain because of the injection. 

- I haven’t had much side effects so far. Just feeling extremely tired during the day but can’t dose off at night. 

- it’s still early days, but I have been coping okay. Just wanting to say ladies, keep positive and sometimes things are not as terrible as we expected! 

lots of love, Plum xx

[cubot]

Morning all, lovely weather here too!

Thanks for the itchy bottom advice peeps 🤣 actually I had this a bit too around the same time post chemo - didn't really think anything of it at the time but will definitely get the salt out next time!

CactusQueen the anticipation for me has always been soooo much worse than the reality (for surgery, chemo, etc as well). With the hair loss I'm trying to visualise what it will be like to experiment with different styles when my hair grows back once chemo's over (and when I can got to the hairdressers, though in the meantime my mum's been doing an amazing job!) - focusing on the fun future bits as much as possible 😊 Just in case you didn't see this link further down the thread lots of ladies here have spoken to https://www.cancerhaircare.co.uk/ who are amazing so recommend you contact them!

With this whole experience it's so much new stuff so quickly; I find it takes me ages to process and a lot of emotional energy too. We can do it though! xxx

[CactusQueen]

Good morning everyone 

It’s quite nice here too. I’m going to supervise my son cutting the grass and potter about in the garden. Anything to take my mind of tomorrow afternoon! Thank you so much Cubot for the link about cold caps and your advice. I found it really useful. You seem so positive about hair loss, hopefully I’ll be like that in a couple of weeks. I have found that it takes me a while to get used to the new things I have experienced during my treatment. 
Enjoy your day everyone 

Love CactusQueen 

[ttyler]

Morning everyone,

I was not given a laxative either and have not needed one until now. Like Tabs said if you ring the unit I’m sure they will advise you or prescribe the relevant medication.

 Hope everyone is feeling okay today. The sun is out here and it looks like it’s going to be another beautiful day.

 I am feeling really well more and more like myself again each day, however mentally I have began worrying about my second cycle. The thing is I had fec and the f part of it gave me a terrible head ache. It was like a sinus headache and felt like my nose was going to explode. My nurse has told me to take a paracetamol this time to stop the pain but was wondering if anyone else that had fec got this headache and how they relieved it. Would sinus medication be better?

 Enjoy your day everyone  Tara x

[Tabs]

I haven't needed to use it but I asked in advance if the lactulose I was given after surgery would be OK to use if needed and they said yes. It's probably best to give your nurses or hospital or local pharmacist a call. Good luck

[Butler10]

hi sorry for replying on your link but dont seem to be able to start new post.  But my question is about laxatives  .   First chemo had no problem with going to toilet. But this time iv not Bern able to go so hv ordered on my shop today some if those dulcoease and was wondering if any body no if this ok. Or what you was actually given from hospital   thanks x

[ttyler]

Hi Tabs,

As crude as this may sound the salt water baths is great to heat for me as I am now into week 2 and that is what is happening. I am going to try this technique. Thank you for sharing.

Also although I am more swollen my weight too has stabilised. I too have put in a covid stone since surgery on the 9th April.

 Sleep well ladies

 Tara xxx

[Tabs]

• Am still waiting for my prosthesis which is boring. The hospital told me that that they've started doing fittings again but they seem to be on day 13 of my cycle when my bloods will be low so it would seem that I'm stuck for a while. I've got a top tip if anyone wants one. I had a sore throat at ever so slight temperature on day 6 (37.6). The person who answered the helpline said that a sore throat is common with chemo due to irritation of the mucus membranes there (my hospital had only mentioned it re covid). The answer was gargling with saltwater. During week 2, both my front and back bottoms have been itchy, the answer was also soaking in saltwater, either Bath, bidet or washing up bowl. That's probably too much info for you but I thought I'd mention it in case any of you are suffering in silence. 

[cubot]

Hello everyone, welcome CactusQueen!

I'm focusing on CactusQueen's comment about the cold cap as I gave it a go. First off: the coldness didn't bother me at all, in fact it was quite soothing! Secondly: I recommend taking a stretchy headband to put around your forehead - the nurses put gauze to protect mine but for me the cap was very tight there so I got a bit of a pressure headache from that. Thirdly: make sure it's fitted tightly - the nurses should too but you're the only one who can feel whether it's snug enough. There are videos on this website which show how it works, I found them really helpful to watch beforehand: https://paxmanscalpcooling.com/patients/ Fourthly: take some conditioner to put on your hair; this is to make sure your hair doesn't freeze to the cap! I took leave in conditioner which meant I didn't have to wash my hair for a while.

Finally, be aware it might not work. I do still have some hair left just over three weeks after one session of chemo, but probably about 25% of what I originally had. I've cut it really short (today - and I actually love it, very liberating if a bit GI Jane!) and you can see my scalp through it, so I'm not going to have the cold cap at my second session. I'd still recommend giving it a go because it does work well for some people! Good luck! 

Hope everyone else is doing OK 😊 xxx

[Tabs]

Belated welcome cactus Queen. Horseylass, can you where long sleeves, trousers and boots when you go out to avoid bites. Horse flies are really vicious when they get you. I normally have a good bmi though I gained a covid stone since my surgery at the beginning of April. I'm on a 3 week ec cycle, I put on weight in week 1 but I think it was mostly water retention and have now lost that and stabilised now I'm at the end of week two. 

[ttyler]

Hi Ann,

To be honest when I am worried about something or poorly the weight usually drops off me, however since finding out I had breast cancer all I have done is eat. For the first 3 days after chemo I struggled because everything tasted like salt, however I am now back to eating like a pig again. I am not necessarily eating bad food but am craving white bread and pasta. I only have to look at carbs and put a stone on lol 😝  

 My Nan had brain cancer 26 years ago and I watched her tiny frame go through chemo and get smaller and smaller. I am not saying that will happen to any of us but I have go it in my head that if I have a bit of weight to help my fight. However I do realise that being over weight is also not good for cancer. I am just trying to eat at the moment and then will have to go on a diet when I come off chemo. Although I do feel that my fat fingers are because of water retention due to steroids as they are fat from the top to the joint and my face has got fatter too. I’m still in the same size clothes just look a bit more swollen. Trying to drink lots of water to help it.

 My mother in law has just been through bowel cancer, stage 3. She is a survivor 2 years clear and she lost lots of weight all the way from having pains in her legs/belly 6 months before diagnosis til finishing treatment. She went from size 14 to size 6. Just back into her size 14 because she has given me some comfy trousers of hers to wear around the house.

As long as you feel okay and don’t loose too much weight which they will monitor I’m sure you will be fine. I would rather loose it than out it on 😝 

Tara xxx

[ann has cancer]

Am I the only one loosing weight? 

[ttyler]

Hi Horseylass,

my fingers have got so fat from the steroids what I type does not always make sense lol 😝  

 My gnat bite is still there but not as red my husband assures me so think that is what it is and not an abscess which is what the unit thought it could be. The nurse called to check on me this morning and agrees it probably is just a gnat bite lol. I was told to take piriton to help with the itching. This has worked a little.

I know what you mean about walking, I love to have a little walk and 5 minutes to myself. Just have to be extra vigilant with them pesky flies. It’s amazing how carful we have to be whilst going through treatment. 

 It must be lovely living on a farm, my 7 year old would love that. He has Aspergers but has a great calmness with animals it’s as though he really gets them and they understand him. He says he wants to be a vet and I often imagine when he is older that he will have a house surrounded by animals or maybe a even better a farm like you.

 Hope all goes well for you on Tuesday.

 Tara xxx

[lam477]

hello all you lovely ladies. Sorry I’ve been quiet for a few days.  Welcome to the new people sorry I’m useless with names.

well I had my first course on Thursday as as I said a bad day but things have improved slightly. Although I feel like my energy has been zapped all I was to do is sleep.  I don’t really feel like eating but know I’ve got to.  All I fancied yesterday was Chinese sweet corn and chicken soup so I made the rest of the family endure a Chinese just so I could have my soup and oh my it was amazing.  I’m just sleeping as and when I need to but I do feel guilty for the rest of the family.  I’m trying to be on my best game by Tuesday as it’s my daughters 14th birthday and don’t want to ruin it for her.

my wigs haven’t arrived yet but my hats from hats4heads have and they are brilliant for the cost.  I got 6 different ones for about £40 so can have a change when I fancy it, although so far my hair is all in tact (I think) I’m paranoid when brushing it and check the brush to see if it looks like a normal amount.

still having to take the anti sickness tablets every day and now on a laxative but apparently that’s from the steroids they give you.  I’ve not had to have the injections this time but they said they will reassess at my next session.

good luck to those starting their treatment on Tuesday 

xxx

[Horseylass]

Thanks for that Tara, that’s really helpful.
Are you ok now after your gnat bite yesterday? I have to say I’m paranoid about insect bites at the moment as I was warned to be careful after my surgery and now with the chemo too. We have loads of cleggs (horseflies) at the moment and the damn things were trying to bite this morning whist I was walking the dogs. My husband says I should stay in the house but it’s my daily exercise and one bit of normality! We shall see. I’ll perhaps avoid it on my vulnerable week. 

[ttyler]

Hi,

Ann is right the injections don’t hurt. My mum and husband did mine for me but then the other day I was in my own so did manage to do it myself. Something I was worried about but was really okay. Just sit down pinch your skin between your finger slightly and gentle put the needle in. The you push the liquid in and mind sprang back so that you don’t stab yourself as the needle comes out or before you put it in your sharps bin. The hospital should give you one of these.

 Hope everyone is having a good day.

 Tara xx

[Horseylass]

Thanks for the information about the injections Ann. There’s no way my husband will do them for me. We have a farm and I have to do all the injections for the animals. So I guess I’ll be doing my own! 

CactusQueen, I know what you mean about phone appointments. My physio one was a real waste of time. I guess we just have to be thankful that it reduces the number of potential exposures to Covid. 

[CactusQueen]

Thanks for the welcome everyone 

I am having 3 sessions of EC then 3 of something else! I had my pre-chemo appointment on the phone sitting in the hospital car park whilst waiting for my PICC line appointment. I don’t really like phone consultations, I find I zone out when they tell me something negative and don’t really get back on track. I understand why they are necessary though. The nurse might have mentioned injections but I really don’t remember. 
Love CactusQueen

[ttyler]

Sorry ladies I am such a bubble head. We have got your hand too Cactus queen for Tuesday ladies not tomorrow.

 Lots of love 

💕 Tara xx

[ttyler]

Morning ladies,

welcome to the ride cactus queen 👍🏻 

Good luck for tomorrow Horseylass remember we have all got hold of your hand, you have got this!

 Hope everyone is feeling okay today and happy Father’s Day to all of our partners that are daddies to humans, furry people or those dads here in spirit.

 Have a nice Sunday!

 Sending lots of love
 Tara xx

[ann has cancer]

Hi Cactus Queen and Horseylass, I am also on EC Horseylass and you will be given 7 jabs to take home with you, really fine and short needle, doesn't hurt, it helps your white blood cells (hope I have got that right), my hubby does it for me.  Will be thinking of you both Tuesday.  Cactus queen lots of us are new to forums, this one is a life saver, all welcome.

[Horseylass]

Hi CactusQueen,

We’re all friendly here and are here to support each other. I hope that eases your apprehension. 

I’m starting my chemo on Tuesday too. Have you had your pre-chemo assessment? I have mine tomorrow and I’m hoping to find out more about what will happen. I’m having six sessions of EC. What are you having? I’m not bothering with the cold cap as I want to spent as little time as possible there and I figure that I’m not really going to be seeing many people so I’ll just cope with hats! No one has mentioned injections to me either. I hope I know more after tomorrow. 

I hope everyone else is good today. 

xxx

[CactusQueen]

Hello everyone 

I am completely new to forums or any sort of social media so I am feeling a bit apprehensive. I hope I do things right!
What a crazy year it’s been for all of us. I first went to the doctors at the beginning of April, two operations later I’m due to start chemo on Tuesday. Thank you so much everyone for the advice you’ve given. I’ve been reading the posts for two weeks wondering whether to join in. I am very scared about Tuesday and the days after, hopefully it won’t be as bad as I think... I am going to try a cold cap so would love to know any advice/ successes people have had with one. And what’s this about injections?! No-one has mentioned that joy to me.

Happy Father’s Day to all the dads out there.

CactusQueen

[ttyler]

Thanks for the information Mai. Interesting about the alcohol wipes.

 Good night Ann and to you other ladies. Sleep well

Tara xxx

[ann has cancer]

How funny, just glad you are ok.  Sleep well

[Horseylass]

That’s really interesting Mai. 
Thanks ever so much. xx

[Mai7]

I just came across this article on nausea which I thought was worth sharing.  Written by a nurse who had cancer:

https://www.mission-remission.com/nausea-what-helps 

[ttyler]

Bloody text gremlins. My gnat bite does not stink it stings! X

[ttyler]

Hi everyone,

 sorry I have not been on much today. Had my last injection last night and it took the wind right out of my sails. I had a pulsating feeling in my bottom and i went all stiff. Call the unit for advice and they told me it would be the white blood cells rebuilding themselves. No temp or other symptoms so okay. Then this morning I woke up with what looked like a gnat bite in my left bum cheek 😝 it is itchy and stinks no puss in it. Called the unit again and doctor has told me to keep a real eye on my temp today and if I get Puss I need to go in to see him. To top it all off I bit my tongue in my sleep and now have an ulcer. Well I can safely say that I am feeling loads better sickness and heartburn wise but feel like I am having my monthly lady cycle, and high I have not had for 7 years due to being in the deli injection. I am currently trying to sit down to eat lunch but everything stings lol.

 Rant over! Hope everyone else is okay the weather is beautiful here now after the tai. This morning. On the plus side a had a nice long warm bath this morning and imagined I was lying on the beach somewhere nice with the breeze blowing all over my body. Can wait to feel that again!

 Love to you all

 Tara xxx

[ann has cancer]

Hi Shi & Cubot and all you lovelies, thank you for your words, you are quite right Shi and your comments about looking into my eyes bought tears and relief.  You all make this easier to bear.  Cecelia if you are in touch with cancer hair care perhaps they would want to know, if not for you perhaps others?  Cubot, really sorry you are having such a fight.

Thanks to all  love aNN

[cubot]

So sorry to hear that Ann, it is horrible when you're hoping that something is going to be able to make a positive difference and it's a disappointment. Like Shi said you might be able to go and have a look at some different ones if you ask your specialist nurse? I was hugely disappointed when I received my silicone prosthesis and have complained about the whole consultation process. I've fed that back via my specialist nurse and they are going to set up an in person appointment for me with them (rather than the company that is contracted to 'fit' the prostheses). I found it really hard to decide to give the feedback as at the moment anything tips me over the edge emotionally, but the nurses are being incredibly supportive and understanding, so I'm glad I did. Although I appreciate that we can get wigs and prostheses on the NHS it is a bit depressing how limited the options are, I'm thinking of Cecilia's experience too where she said there weren't any wigs suitable for her.

Hope your hat arrives soon xxx

[Shi]

Ann, so sorry to hear your wig is not what you were after, I don’t know if your Macmillan centre is open at your trust? They have preloved wigs that you could buy for a donation, I’m not sure if that’s possible with Covid though. Luvyababes do great wigs (and not just fancy dress ones) I’m not sure if they are online or when their shops are open. I had some good ones from amazon too and they came quickly, maybe order a few to try if you can think some good ones I had were only about £20 or so. Raquel Welch wigs are good too, I had one of those too. (The steroids sent me wig buying crazy during chemo). Hope this helps you get something you feel comfy with, it is usually distressing to start with because you don’t see you, but I promise you, you are still there, look deep into your eyes in the mirror, you will still see you ❤️💕💕✨✨Shi xx

[ann has cancer]

Thankyou Horseylass, I have just bought a hat on-line it seemed the quickest solution.  Sleep well love aNN

[Horseylass]

Oh no Ann, what a shame and how disappointing. There is a website that Shi mentioned further down the thread that sells wigs, maybe they could help? I’ve just looked it’s called luveyababes.

I did start out not wanting to tell anyone but I have since told a couple of friends and some family and it’s actually really nice to have their support. 

This thread is for all of us having chemo in June 2020 and I think the idea is that it is just ongoing for us so that we know where to find each other. If you want to start a new thread you need to go to the relevant section on the forum and click on the New post button at the top. For example this thread is in the Chemotherapy monthly threads section. Does that make sense, I’m sometimes not very good at explaining things. 

[ttyler]

Hi Ann,

 I don’t know how to start a new thread either lol. Not very good with technology unfortunately.

I am sorry to hear about your wig. What a nightmare. I suppose that is the problem with not being able to try them in properly. Bloody virus. Mind you Ann I often say I don’t do things by halves. Look at us we got cancer during lock down and I’m not sure what type you have but I have a really aggressive form. If you are going to get it might as well go all out hey?

 Do you know a hair dresser that could tweak if for you to make it look more like your normal hair? Hair salons are back open in just over a week. I’m sure you would look beautiful without the wig but was just thinking if you want to keep your journey to yourself.

 There are some lovely hats and scarves out there and the other ladies have included links to where you can get them from.

 Please don’t be disappointed, keep smiling 

 Tara xxx

[ann has cancer]

Sorry Tara for replying when I actually want to start a new post but can't work out how.  My wig arrived today, I waited 3 weeks for it and it's awful, really gutted, I've sent it back and will now not buy one. Since I have not told a sole about my cancer life is going to get challenging if I am seen.

[ttyler]

Hi Cubot,

They do yoga at the gym I go to. Think they have been doing virtual classes over lock down, however this may be too intense.

 I used to be a competitive swimmer and so miss swimming right now. It really helps me to think and get my brain in order. In fact I have not been swimming since the night before my biopsy results when my friend told me it wouldn’t be cancer and probably just a cyst. Funny how things turn out isn’t it? I am a member of the gym but only use the pool. I take the kids in there and my husband goes in the gym. Then he comes  in the pool to watch the kids whilst I lane swim. We have a little process lol. 

 I was going to get a Nintendo switch and do the get moving exercises on there but due to lockdown I can’t get one from anywhere. I will have a little search in YouTube to see if I can find something low impact.

 How is everyone feeling today?,hope all okay.

Tara xx

[cubot]

Cecilia it's good to hear I'm not alone (although obviously I would have preferred we both stuck to our schedules, oh well, that's one thing I'm being taught it's that I can't control everything which I guess is a good life lesson!). I am also probably just going to rock bald/headwraps/turban etc, while the wigs do look amazing I think for me deciding what to choose would be quite stressful! They probably don't do a half brunette half grey wig 😂 which is what would be closest to my previous hair!

Tara sorry to hear you're achy, hopefully it'll pass quickly for you. Exercise-wise I've been doing yoga and gentle walks. My oncologist talked about the importance of keeping active and suggested the Joe Wickes workouts but I've never exercised that much before in my life so didn't feel like starting now! I found that when I was achy the yoga was quite helpful - I was taking classes before this so asked my teacher to help suggest some poses. I also found it helped quiet my mind and with sleeping, so maybe worth investigating? I only do very gentle stretching though, no leaping about attempting to look like an instagram yoga goddess 😝

xxx

[ttyler]

Hi ladies,

in regards to anti sickness I had it through my I’ve before chemo and then an emend tablet to take for the 2 days that followed. I also have donperidone to take when I feel sick. These along with the lanzoprazole have really helped.

 Cecilia my husband thinks that I should wear a bald head when my hair comes out and a lot of people look very beautiful like this. I think Robyn Roberts an American news reader did when she had cancer and look at Kylie minogue. I bet you look equally as stunning you go girl! My hair has always been important to me do not sure how I will feel without any but am willing to see how I feel.

 My body really aches all through the night last night. At one point I went to the loo and seized up so had to slowly get up and walk like a crab back to bed! I watched pesky blinders on Netflix yesterday, really getting into that and did not move much off the sofa. I am going to try and walk around the garden today for exercise. Is anyone else exercising at the moment and if so what have you been doing?

 Just off to have a bath now to try and relieve the pain. 

 Hope everyone is feeling okay and has a nice day.

 Love Tara xxx

[ann has cancer]

Hi Lam477, I had the same sickness problem after first chemo and ended up in a & e, luckily they changed my anti sickness for the second treatment so I felt nausea but was not sick, so make sure you tell the nurses.  My main issue is food, I can't eat what I want as my stomach doesn't like it so I seem to be living on bananas, chicken and salmon but only tiny portions ie 100 grams a meal so I will definitely not be putting on weight.

[cecilia]

The wig looks great on you ttyler 

[cecilia]

Hi all

hi cobut

like you I was unable to have my chemo on Tuesday due to 

low white blood cells count 

i need to wait two weeks 

and funny enough I was also  disappointed when I was told

I've decided not to wear wig just because it very difficult to find the perfect fit a black lady

of certain age 

I have been getting a lot of compliments on my point one shaved head 

did anyone here have a sun burn side effect from their radiotherapy treatment and 

what are you using to relieve the itch 

i hope you are all keeping well xx

[ttyler]

Hi Lam,

You have not brought the chat down. That is the whole point of it to discuss how we are feeling good or bad and to support each other through this bloody awful train ride. You have now entered the tunnel and there will be light at the end of it!

 Well done you on your first round so brave. Luckily I was not sick but did feel exactly the same as you are describing and was surprised that I was not sick to be honest. As the days go on you should get better. Mine is just aches and pains now really in my lower back and legs I think from the injections. Do you have to have those too? 

 The flowers sound lovely, enjoy you deserve them.

 Hope tonight is okay for you and you feel better tomorrow.

 Lots of love

 Tara xxx

[Shi]

Lam447, try and keep hydrated ❤️ And do ring your rapid response number, don’t try and struggle through, you don’t need to and your team are there to help you ❤️ I had akynzeo before chemo and then the m one that mai7 has mentioned below and was ok with that, others on the oct17 thread wore travel bands that helped them during chemo. Please do let your team know, they will tweak your meds till they get right combination ❤️💕💕✨✨Shi xx

[cubot]

Hey Lam, so sorry to hear you feel rubbish 😪 If it helps I was also sick twice the afternoon and evening of chemo (the anti-nausea pill I took was probably too late) and once the following day, plus I had a banging headache, so I don't think it's out of the ordinary how you're feeling even though it sucks. The nurses and oncologist have said that they can give me more hardcore anti-nausea meds if I want, so definitely ask your team if that sounds helpful. I did get back and shoulder pains but that was about days 3-6 and was from the injections, so not sure about the kidney pain - maybe call your acute care helpline if you're worried? They were very reassuring when I called them about being sick twice. Btw I also had trouble sleeping for quite a few nights, got really hot and woke up thirsty all the time, so keep a bottle of water on hand. Really hope you feel better soon - you can do this! xxx

[Mai7]

Hi lam477,  sorry to hear you’ve been a bit pukey.  When I was on chemo I took metoclopromide anti-sickness medication which worked fine for me but not for everyone.  I know some upgraded to Emend but had to ask for it as it was more expensive.  Xxx

[lam477]

Tara loving the wig, when mine arrive I will post pictures.  Well had my first round today of Fec, it went really well no issues being given it at all.  Came home and felt like I had the worst hangover and sickness possible took an anti sickness tablet which didn’t help and finally at 8pm was sick.  Now my back (kidney area) is hurting but think it’s from the wrenching.  Has anyone else felt like this after their first one? I’m hoping I’ve got the worst of it today and will be ok tomorrow 🤞  But on a positive I got home to a lovely bouquet from a friend which cheered me up as well 

sorry to bring the chat down.  Xx