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June 2020 chemo starters

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Re: June 2020 chemo starters

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

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Re: June 2020 chemo starters

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

Anna

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Re: June 2020 chemo starters

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

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Re: June 2020 chemo starters

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

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Re: asRe: June 2020 chemo starters

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

 

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asRe: June 2020 chemo starters

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

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Re: June 2020 chemo starters

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

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Re: June 2020 chemo starters

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

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Re: June 2020 chemo starters

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

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Re: June 2020 chemo starters

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. 

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Re: June 2020 chemo starters

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). 

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Re: June 2020 chemo starters

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

 

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Re: June 2020 chemo starters

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

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Re: June 2020 chemo starters

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 😖 

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Re: June 2020 chemo starters

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/ 

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Re: June 2020 chemo starters

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

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Re: June 2020 chemo starters

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

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Re: June 2020 chemo starters

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 😘 

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Re: June 2020 chemo starters

Dear Plum

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

Love CactusQueen 

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Re: June 2020 chemo starters

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

 

 

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Re: June 2020 chemo starters

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

 

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Re: June 2020 chemo starters

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 

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Re: June 2020 chemo starters

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

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Re: June 2020 chemo starters

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

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Re: June 2020 chemo starters

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

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Re: June 2020 chemo starters

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

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Re: June 2020 chemo starters

  • 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. 
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Re: June 2020 chemo starters

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

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Re: June 2020 chemo starters

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. 

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Re: June 2020 chemo starters

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

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Re: June 2020 chemo starters

Am I the only one loosing weight? 

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Re: June 2020 chemo starters

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

 

 

 

 

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Re: June 2020 chemo starters

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

 

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Re: June 2020 chemo starters

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. 

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Re: June 2020 chemo starters

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

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Re: June 2020 chemo starters

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. 

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Re: June 2020 chemo starters

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

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Re: June 2020 chemo starters

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

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Re: June 2020 chemo starters

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

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Re: June 2020 chemo starters

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.

 

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Re: June 2020 chemo starters

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

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Re: June 2020 chemo starters

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

 

 

 

 

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Re: June 2020 chemo starters

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

 Good night Ann and to you other ladies. Sleep well

 

Tara xxx

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Re: June 2020 chemo starters

How funny, just glad you are ok.  Sleep well

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Re: June 2020 chemo starters

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

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Re: June 2020 chemo starters

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 

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Re: June 2020 chemo starters

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

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Re: June 2020 chemo starters

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

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Re: June 2020 chemo starters

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

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Re: June 2020 chemo starters

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