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September 2021 Chemotherapy starters

louby_lou69
Member

Re: September 2021 Chemotherapy starters

@Magenta59 

I was told to take the steroids at 6/7 am and then 12/1 pm otherwise your sleep will be affected.

Just been out for a 4 mile walk as I'm doing the walk 100 miles in October so I need to get the miles in whilst I feel reasonably well.

Enjoy your Sunday everyone- my other half has got a joint of lamb on the go.

Lou x

Magenta59
Member

Re: September 2021 Chemotherapy starters

Hi @HMLL 

Hope you are feeling better today. I totally agree with you about the hungover feeling. It's not a lot of fun! At least getting out for a bit of fresh air and exercise can help-I managed that most days, but on some you just feel too ill and tired to do much else. I am the same with the Dex-I was taking 16mg twice a day and only managed 6 hours over the 3 nights I was on them. I was exhausted by the day after they finished and that's when the side effects also kicked in. Still didn't sleep much that night even though I thought I would! It's potty! I am going to take them earlier this time-someone suggested second dose at lunchtime! Will see if that helps! At least they prevented nausea and sickness so I guess I just have to take the rough with the smooth.

Hope everyone else is having a good day and coping with it all.

My next chemo is planned for Wednesday and i feel like I have recovered reasonably well. have had a relatively good week and have got out and seen to my pony every day. Had some nice little rides out, when it wasn't pouring down. I am 2 and a half weeks in and my hair is shedding profusely. Just washed it this morning and loads of it in the basin and my hairbrush. I reckon I will be doing a buzzcut in a day or 2! I had a wig fitting last Thursday and hoping my wigs will be here early this week-it looks like I will need them sooner than I thought! Plenty of hats etc at the ready now the weather is getting cold.

Big hugs to all you lovely ladies.

Jane.x

 

CT2021
Member

 
HMLL
Member

Re: September 2021 Chemotherapy starters

Yep, the hangover from hell without the fun the night before! I’m on day 2 post 3rd cycle fortnightly EC and feel like a bag of crap today. Have been out for my 5km stomp in the rain but that’s about all I’ve managed other than keeping the smalls alive. 

I had terrible insomnia last cycle with the dex, 9 hours sleep over 3 days so this time I’m just 4mg am. Feeling more nausea as a result but I’ll take that over the insomnia! 

louby_lou69
Member

Re: September 2021 Chemotherapy starters

I had my first chemo (EC) yesterday so although in October I'm still reading all your posts.

The actual chemo experience itself wasn't too bad, the staff were great.

I had my steroids at 2.30pm so I haven't slept great but they explained to take them at breakfast & then lunch today. I've had no sickness so far (took anti sickness even though I didn't feel sick) so I hope that lasts.

I just feel very woozy and lightheaded - but like a hangover. I'm drinking squash like mad and will have done about 3 litres by lunchtime. 

My plan is stay home and do nothing today. 
Lou x

Lu_B
Member

Re: September 2021 Chemotherapy starters

Hi, everyone,

very nice to hear about everyone’s stories. It seems to me that a lot of us get sore tummy’s and indigestion. I am on the second week after my third cycle and I decided to keep away from any type of pulses( beans, lentils, etc) this time and it helped. I also ate some really bland food like rice pudding and rice noodles!

I also definitely get the flushes during the night which are worse if I had any spicy food, so trying to avoid that, although I love it.

I finally decided to take some sick leave from work for the next cycle which will happen on Tuesday (5th). I will need my rest as I felt more side effects and tiredness this last cycle. Until then, will try and enjoy the autumn sun and good pleasant things. Lots of love and hugs tintou all.....xxx

veestar
Member

Re: September 2021 Chemotherapy starters

Morning all,

Finding all the posts so helpful thanks everyone, all on our journey's.

I still keep having a niggling headache, the doctors gave me some codeine TTO's on chemo day this week so that's helping. I ve hidden my wigs ( I ended up buying 2, not sure why!!) under my bed as no hair loss yet. week 3 this week. My teenage boys friends are finding them freaky sitting on my chest of drawers. I m separated from my ex husband so my room is very girlie now!

Hope it stops raining this weekend, forecast looks wet.

Take care everyone

x

aliess
Member

Re: September 2021 Chemotherapy starters

@Mrsmillie 

Sorry to hear you’ve had a rough day. Hope you sleep well and feel better tomorrow.

💕

aliess
Member

Re: September 2021 Chemotherapy starters

@paula43 

Welcome! 😊

we are on the same regime. My 3rd tomorrow. 
🤞🏻it goes ok, For some reason I'm dreading going this week. Last week I had a really bad acne breakout but that seems to have settled after using sudocreme, have sore throbbing gums and possibly a VG infection which I’ll talk to them about tomorrow. (Sorry but if we can’t mention these things here then where😅) I also have a tender scalp. Took my wig to my hairdressers home today and she trimmed it a little. I think it’ll be ok. 
sending love and hugs to all you ladies 💕

Mrsmillie
Member

Re: September 2021 Chemotherapy starters

Hello all,

Had my 3rd session today, didn’t go as smoothly as first two, similar to @paula43 had some kind of allergic reaction so treatment was stopped for 20 mins, things settled after hydrocortisone kicked in and I decided to go ahead with session, felt nervous but glad I did it. Feel very tired now so hopefully will sleep tonight.

@Magenta59 Think I might try your Schweppes ‘recipe’…..better than taking medication if it does the trick, I’m not suffering badly just the occasional heartburn at night so could be a good bed time drink. Great you have your wigs sorted, I’m persevering with the cold cap and so far so good, but I do know where I’ll be going to sort wig should I need to, have to have every eventuality covered! Hope your pony is happy and dry with her new rug, wouldn’t wish being in this horrible weather on any creature.

Hugs to all xx

Magenta59
Member

Re: September 2021 Chemotherapy starters

Hi @paula43 

You have had a bit of an ordeal to be sure. Hope your treatment is still being kind to you this cycle. I am due my second next week and hoping it will go as well as the first. But you can never tell by the sound of it! Your first went well and then your second had to be abandoned by the sound of it due to an extreme reaction! What a nightmare for you, and then I suppose you worry because you willbe wondering whether you got enough of it into your system to do it's job? That must have been hard to cope with.

Think you are right about the hair loss-I am on day 15 now of cycle one and it's falling out quite freely today! But at least the wig is organised and I have an assortment of scarves, pre-tied bandanas and hats at the ready! Also I have some fake fringes that can be attached to a headband and worn under a hat or scarf. I don't want to wear a wig down the livery yard-it is so windy down there some days it would blow off I reckon! LOL! It bad enough when your hat goes sailing down the paddock!

Hope you have a better night tonight. Jane.x

 

Magenta59
Member

Re: September 2021 Chemotherapy starters

Hi @Somerset Bunny 

Aww you didn't have a great night did you? You did right calling for advice. I rang the oncology ward myself last week when I had really bad abdominal cramps-the pain was awful, felt like I would pass out and just in and out of the loo for a couple of hours when I got up. Chased my partner out twice when he was trying to clean his teeth and gave a shave! LOL! They sorted me out with Buscopan which seems to be working a treat. I did have bad indigestion and a bit of tummy ache one night this week (think my dinner didn't agree with me) and resorted to some Schweppes peppermint cordial in some hot water as the gaviscon wasn't helping. It actually worked! And it was quite a pleasant night-time drink. Might be worth trying if you are going to get indigestion often during treatment cos it can be awful when it's bad. Morrisons sell it, not sure about the others.

Hope everyone else is having a good day, despite the weather. It has rained all day in York. No riding today. My pony was wet through despite a waterproof rug! I changed it for a more heavy duty model which should keep her dry tonight. You just don't want to be out there!

The wig fitting went well-I had a friend and my daughter there for advice, and we have ordered "Audrey" in 2 different colours so I can choose which one I like best. I should be getting it early next week, which is just as well as hair is now starting to fall out with a vengeance!

Big hugs to you all. Jane.x

Somerset Bunny
Member

Re: September 2021 Chemotherapy starters

Hello @paula43 

My goodness you have had a quite a journey and I am so pleased you have an easier time of it this last round, I like you am not one to normally frequent forums but have found this one to be friendly and informative……we are a all warrior sisters (a moniker used by a friend of mine who has survived this bastard disease) x

Somerset Bunny
Member

Re: September 2021 Chemotherapy starters

Good morning @Magenta59,

I think any dental work is off the agenda while on this wonderful journey, I visited my dentist before my treatment kicked off and had to have root work done on a tooth (which cost me an arm and a leg as their are very few NHS dentist left around here) as they couldn’t do it once chemo had started. I am sure the wig fitting will go well I have booked one in when I am on my next round.

My night didn’t improve, ended up ringing the cancer line twice as I was nauseous and had painful indigestion (I think was down to the steroids) I walking around our garden at 10pm trying to shift the pain, it took me back to when I was in labour! After a bit of supper 1 piece of toast and half a cup of warm milk I did sleep. Did any of you find though that you were up in the night peeing for England after chemo?? Thankfully feeling more myself this morning and might go for a walk later if the weather improves as looking out on the levels all I can see is cloud and rain.

 

paula43
Member

Re: September 2021 Chemotherapy starters

Hello ladies, I've been reading this thread the past few weeks so am finally brave enough to jump in to chat 🙂

It's been so helpful reading your experiences so I hope by joining I will do the same

I was diagnosed with Estrogen+, Her2+ , 28mm tumour in July, there was no lump, pure chance on a check up mammogram for another issue I was having with discharge from my nipple the past 3 years which had gone away with antibiotics but with Covid, check ups were all delayed. The MRI then showed I also had DCIS in a different location soI a single mastectomy end of July and started 12 weekly rounds of Taxol on the 15th September, with Herceptin every 3 weeks for a year.

First round went perfectly, not much side effects but last week was a nightmare. They had to stop half way through - had a bad reaction which knocked me for six physically and emotionally. Went back for no 3 yesterday, got the pre meds like the 1st round and I skipped out of the ward! Some stomach cramps last week and then diarrhea(sorry TMI) but slept fine and work to a dull headache. So fingers crossed the next few days go ok.

My hair is still in tact - scalp feels a bit tender but I haven't noticed any major amount of shedding - they said day 15 onwards - which is today so time will tell I suppose.

You are all fantastic and wishing you all a good day 🙂

Mrsmillie
Member

Re: September 2021 Chemotherapy starters

@Somerset Bunny  Well done, one to cross off…..hope you feel better after a good rest.

@Magenta59 Bit quicker today, traffic not too bad so there and back in 2and half hours, I jokingly said it was hardly worth going home as I’m back tomorrow, she said if I had an early appointment they do have a bed available…..I think she was joking!! Last week they only looked at my blood test results when I got there, so if there had been a problem it would have been a wasted journey, I really hope that’s never the case. You may be different as you have a day in between so surely they would have time to contact you if need be 🤞🏻
Hope everyone has a decent sleep tonight xx

 

Somerset Bunny
Member

Re: September 2021 Chemotherapy starters

Well ladies that’s the first one done….my God though feel like I have been run over by a train…so it’s off to bed for me, hoping this improves with time. Much love to you all. Sue x

Magenta59
Member

Re: September 2021 Chemotherapy starters

Hi @Mrsmillie 

That is a lot of driving for a short appointment! When a client of mine had lymphoma and was undergoing chemo, they used to do his bloods on the day at York, as they lived about 20 miles away. It saved making 2 journeys a day apart. I guess each NHS trust does it differently. I have to go for bloods on Monday, next cycle Wednesday. It can take me nearly 30 minutes to get there and I am not even that far away-the traffic is a nightmare as multiple roadworks here just now! Do they let us know the same day if we are good to go? Not sure I want to be necking all those steroids if it's not going ahead! I have enough trouble sleeping as it is!

Hope it all went well and you are fighting fit for the next round!

 

Jane.x

reluctantexan
Member

Re: September 2021 Chemotherapy starters

This is the sixth day after infusion. For me day 4 was the worst.
I woke with everything aching and very weak. Rasmus (my husband) went with the dog and me for the morning walk. His arm was there at all times. I feel it's important for me to keep my body strength up. I was foggy and shaky and very tired.
I slept almost all day. I got a bit of food down. I slept through until the next morning and woke feeling like myself, partly because I didn't take the night pills.
Next day I feel like me.
I haven't thrown up once. I had diarrhea the second day but controlled it with Imodium. I wasn't taking pain pills at all for my headaches (caused by the prescriptions, btw) but now I'm taking tylenol so I'm pain-free.

So day five I was finally able to eat and I ate too much. Blush. This morning I had to take Imodium again and felt a bit queasy. I also went grocery shopping. Note to self: Wait until week 2 to leave the house.

Mrsmillie
Member

Re: September 2021 Chemotherapy starters

Just to say good luck today @Somerset Bunny it will be a relief when you ha be the first chemo session behind you, you’ll know what you’re dealing with going forward.

Glad to hear things have settled for you @Magenta59 and you’ve managed a decent sleep, makes all the difference! You sound like you are constantly on the go, I’m sure that stands you in good stead as you seem to be focusing your mind on getting some normality into your routine.

Very windy here today, but sun shining at the mo, just getting sorted to go for bloods, 3 hour round trip for 15min appointment, but it’s got to be at hospital because of picc line……hopefully it’ll still be dry when we get back and can manage a walk with dog.

Have a good day all xx

Magenta59
Member

Re: September 2021 Chemotherapy starters

Hi @Somerset Bunny 

I know what you mean about not being able to plan anything. I used to have a fairly regimented life, being self employed, and having the pony to fit in around work. My days were mapped out with precision! Now, I just take each day as it comes, apart from the obvious appointments which are booked. It is very strange! Also not used to having so little to do! I do rest when I need to, and the 2 weeks after chemo were very up and down, but now I am feeling better I am just doing stuff as it comes up. Nothing big, but it is satisfying to be able to deal with little tasks! And if I can get back on my pony, you will be back on your bike! It is a great feeling to get some little aspects of life back to normal, at least for a week or so! And fresh air and exercise are doctor's orders! And so beneficial in many ways. I find going to the pony very therapeutic and now I don't have to rush I can just take my time and pootle about at my leisure! And lovely to catch up with my friends at the yard who are on pony duty when I'm laid up.

I used to be very anxious before my chemo started as there were numerous scans and the dreaded waiting for results in between. Plus they had had to do numerous tests to determine HER2 status, as results kept coming back borderline. Finally a tissue sample from surgery yielded a positive result so at last that part of the treatment was sorted. A lesion in my liver has not become any more clear after 3 scans and a radiologist even suggested it could be an abscee and wanted a biopsy done!It seemed like we would never get underway and I used to worry about the future and whether I would succumb to this awful disease. Now we are underway, I feel a lot better-the mental turmoil in the weeks of waiting, waiting ,waiting was dreadful and I resorted to ringing Macmillans as I was so anxious. The nurse was marvellous. Just let me pour it all out. She gave me the confidence to ask my oncologist all the awkward questions, and he put my mind at rest. A very understanding man. And he ruled out the liver biopsy-no way could I have one! So we just agreed to crack on and monitor the liver for response. I don't think I could have coped with another delayI-I was getting to breaking point. It is a very hard disease to deal with: the number of variations and unclear biopsy results/scans can make diagnosis a very lengthy process. And it all messes with your head. As you say, things can change in an instant.

Hope all goes well with your chemo today. Sending you and everyone here a big hug. You can do this!

Jane.x

 

 

veestar
Member

Re: September 2021 Chemotherapy starters

Jane , my hair isn’t falling out yet either .. 🙏🙏

Magenta59
Member

Re: September 2021 Chemotherapy starters

Morning everyone,

Had a decent sleep for a change and feeling quite good! Most side effects have passed apart from my mouth still feels tender, and the funky taste has not gone away. At least the dental pain has subsided, which had me worried as I do have an ongoing issue with a deep gum pocket which takes me to the hygienist every 3 months. Really hoping it doesn't flare up big style! We are not supposed to be having dental work done, are we? Guess it's an infection risk? If it does get bad, I will ask the oncology nurse for advice, and maybe antibiotics would be the best action if it becomes problematic.

Weather here is very windy and wrapping my sheets around the line, but the rain has stopped thank goodness! I will get a ride today. Woohoo!

Hope you are all doing well, it's great support on here as @veestar has remarked, and so useful to hear other's experiences of the chemo.

The weird thing is, 2 weeks to the day of my first chemo, and my hair is not falling out yet! My oncologist told me it could start shedding a week ago, but no more than usual in my hairbrush! I really thought it would be on it's way by now and I am due a wig fitting tomorrow. Not sure what to do. Is it possible to have a fitting when you still have a load of hair? Or should I shear it off? In a quandary! I feel loth to have a buzz cut if it may stay put another week! Any advice on this would be welcome!

Have a good day all. Jane.x

veestar
Member

Re: September 2021 Chemotherapy starters

Morning ladies

Good to read your updates, such support on this thread.

I am pleased to say no side effects after dose 2 of paxil yesterday. Off to work, not sure how long I will last working but giving it effort for now.

Jane, my daughter has just started riding lessons. sounds like you are into horses, she loves it. Great to be outdoors.

Have a good day all. Veestar.x

Somerset Bunny
Member

Re: September 2021 Chemotherapy starters

@Magenta59 take each day as it comes lovely, easy for me to say I know, but little steps, I to get anxious about the future when dealing with this retched disease, my ASD son taught me not to forward plan to much as things can change in a heartbeat. xx Btw impressed you've been doing your pony duties and managing household tasks it gives me hope to be able to get back out on my bike again once my chemo starts tomorrow, their is nothing like fresh air and excercise to make you feel better.

Also thank you @amy46 for putting my mind at rest yesterday re the Pic line, it was indeed a painless procedure the only issue I encountered was that the line kept wanting to go up my neck and the assisting nurse had to apply pressure to make sure it got to my chest. They then forgot the flush referral and waterproof cover prescription so after X ray (where I was waiting with a secondary breast cancer patient who told me the joys of chemo, I wish she had shut up, I told her everyone is different) I had to go back to Oncology unit which in hindsight was a good call they also didn't give me the anti sickness pill I had been told to take prior to my first treatment tomorrow!!! Hoping things go better Wedsnesday.

Magenta59
Member

Re: September 2021 Chemotherapy starters

Morning everyone and hope you are all coping well.

2 weeks into the first cycle and starting to feel back to normal again. Mouth still a little sore and a runny stuffy nose, and still a bit of an iffy tummy, but so much better than this time last week. Have resumed a more or less normal routine at home apart from being off work of course-no way do I feel up to doing that yet as I tire quite quickly. I am really sleeping badly- @Mrsmillie @aliess, how I wish I could sleep like you! I manage about 2 hrs then the hot flushes disturb me for the rest of the night! Just something to bear with for now, but when I start the Letrozole after chemo ends,I am concerned it will escalate, and by that point I will be back at work. I am worried that this, combined with the arthritis my oncologist says is also likely to result from the Letrozole, will make it even harder to get any decent sleep. SO good to know there are things the GP can give us to help! A lady I got talking to when I had my surgery, was so desperate with joint pain and lack of sleep, she took herself off it, and pleaded for another mastectomy instead! So when I met her she had just had the other breast removed-she must have felt seriously debilitated and ill to get to that point! She said she would rather lose the other breast and have a decent quality of life than go on taking the hormone therapy! Arghh! Dreading it!

So getting on okay at this point, though I realise it may get a little worse with each cycle. Managing to get to the livery yard and do my pony duties, and got a short hack in when the rain stopped. Best way of getting the fresh air and exercise that I can think of! Even did a bit of tidying in the garden and cooked dinner for the family. Hope others are feeling well enough to do some normal stuff too. I hate being an invalid! It makes me feel useless when I can't do much, though I do realise I do need to take it easy some of the time! I am so used to being on the go 12 hours a day it seems strange just sitting about doing nothing! So i am hoping I am recovering well and that my blood counts will be back to normal next Monday ready for the next cycle on Wednesday. I would rather get on with it than have delays!

Have a good day everyone! Look after yourselves.

Jane.x

 

Mrsmillie
Member

Re: September 2021 Chemotherapy starters

Morning all,

Rainy, day where I am….not that I had any plans for going out!

 @aliess I am with you about the sleep, I am finding it difficult to wake up and get going in the morning, I could close my eyes now and sleep, maybe that’s the answer just sleep from one week to the next 😴😴😴😴….but, on a serious note it does make you feel like you are not quite ‘with it’ and I don’t like that!

Have a good day all xx

 

reluctantexan
Member

Re: September 2021 Chemotherapy starters

Hello to all,

I'm new here and was a bit lost on the forum until amy46 took pity on me and helped me out. Thanks, Amy.

I had my first cycle last Friday and have managed to control the side effects pretty well.

As for hot flashes, I was on HRT for 36 years and had to give it up cold turkey in July when we discovered my cancer. (I'm triple positive, which I guess is the exact opposite of triple-negative.) I was using cold packs but discovered that I got faster results cooling off with a spray bottle filled with water. Maybe that could help others, too.

g

Somerset Bunny
Member

Re: September 2021 Chemotherapy starters

Thanks Lou 😊,

Yep being off the HRT has been a bitch, I didn't realise the GP could prescribe something, but like you I don't want anymore drugs at the mo, not that I pill popped ever before! I did mention my hot flushes to my oncologist she said buy a thinner duvet and get a fan both of which I have purchased and like you the fan is running most nights. I wish you all the best for Friday 🙂

louby_lou69
Member

Re: September 2021 Chemotherapy starters

@Somerset Bunny 

My chemo doesn't start until Friday. I had to stop taking my HRT too and I mourn it so much. I have hot flushes and get so hot during the night, I have my fan going for most of the night. 
I have been told my GP can prescribe something else for the hot flushes but I'm reluctant to have any additional drugs at the moment as I'm going to be having enough going on with the chemo.

I hope you go on okay on Wednesday 

Lou. X

aliess
Member

Re: September 2021 Chemotherapy starters

Hi 👋🏻 @Somerset Bunny 

welcome to the group, I had a bit of a wait for HER2 tests also and was borderline for chemo. But I guess we have to throw all we can at it and trust the process. I also stopped HRT but haven’t had any recurrence of meno symptoms. I can tell you though, that since I started chemo I sleep like a log. Everyone’s treatment and experiences will be different in some ways but we’re all here to support each other. Let’s us know how you get on tomorrow

💕

HMLL
Member

Re: September 2021 Chemotherapy starters

Never be sorry for feeling the feelings. The more you share hopefully the more support you get and the better you feel. Hope things are better today xx

Somerset Bunny
Member

Re: September 2021 Chemotherapy starters

Thank you @amy46 ....especially for your reassurance re the pic line 🙂

amy46
Member

Re: September 2021 Chemotherapy starters

@Somerset Bunny  welcome to our group. I am having different chemo to you but 5 rounds in I can honestly say it hasn’t been nearly as bad as I expected. I have a port but I think you’ll be pleased with your pic line. It’s really no big deal to put in (I am

an anaesthetist in my normal life and we put these in a lot) it’s not much more than a Cannula really so don’t worry. 
The hair I can also relate to - I had very long hair, cut it chin length and then shaved it off. Again, it wasn’t as bad as I expected. I do have a wig that I love which helps. You can do this, it’s not the most fun but it’s doable I promise 😊

 

@aliess and @Mrsmillie  thank you for your lovely messages yesterday. I feel a lot better again in today. What a rollercoaster of emotions we are going through. It really helps having people here who get it xx

Somerset Bunny
Member

Re: September 2021 Chemotherapy starters

Hello ladies,

I hope I have clicked on the right option to post within this thread, I founf a lumpin June, had a lumpectomy in July and my chemo journey starts Wednesday (28th September, six round of FEC-T...so Christmas is going to be playful!). The hospital has been testing my tumour and putting me on trials, as they classed me as borderline but have now decided to go ahead with chemo hence the delay (this has not helped my mental health). Apprehensive and emotional atm to say the least. I had my hair cut short in preparation last week which was hard, as it used to fall down well below my bra line just grazing my waist.

Having my Picc line inserted tomorrow, again something I am not looking forward to although I have been informed by others who are breast cancer survivors this will become my best friend. I am a light sleeper, not helped by the fact night sweats have kicked in again since I had to come off HRT so hope I will not find this to uncomfortable, anyone else found they tend to sleep with masses of cushions and pillows now?

Wishing everyone the best of luck and hope our chemo is as kind and uneventful as it can be to us all. 😊

aliess
Member

Re: September 2021 Chemotherapy starters

@amy46 

Don’t apologise! Emotions are bound to be bubble to the surface. I’m all over the place. Fine one minute then totally broken the next, five minutes later right as rain again. Crazy isn’t it! I find myself still disbelieving this is happening and wondering how the hell I got here. We’re allowed to feel sorry for ourselves. 
I woke today with a very sore and angry spotty face. Needless to say I’m staying in 😂 but I’ve made some soup and I’m doing a bit of sewing. Do what feels right for you in the moment don’t think too far ahead. Love to all

💕

Mrsmillie
Member

Re: September 2021 Chemotherapy starters

@amy46 

Never feel the need to apologise for having any wobble, it’s a horrible feeling when you don’t know why your own body is causing you so much anxiety. I’m sure we’ve all had that horrendous feeling that a symptom is so much worse than it really is…..I know I definitely have on more than one occasion, and like you my poor husband has taken the brunt of it all…..I don’t know that you can avoid it, it takes over before you know it. You will feel weary and tearful because the lack of sleep just adds to it all, it’s impossible to feel positive and up for 100% of the time, we have to allow ourselves to feel a bit resentful at times for all we are going through, it’s hard work trying to put on that positive face day after day! Be kind to yourself today and moan away if needed 😖……sending hug 💕 xx

amy46
Member

Re: September 2021 Chemotherapy starters

@HMLL 

That’s really interesting about the fasting. I looked at it but I lost a bit of weight initially through anxiety and I can’t really afford to lose any more so I decided against it.

I had a bit of a wobble yesterday. The soles of my feet feel a bit funny and I managed to escalate this to me not being able to walk. Had a massive melt down on my poor husband. I just had that feeling again from around diagnosis when I get panicking that I was going to die. Horrible. Slept so badly after all the upset. Don’t know how to avoid this sort of thing really. I try to stay so positive most of the time but sometimes I feel weary and like there is still so much to get through. Sorry for the little moan, just feeling a bit tearful and sorry for myself today. 
Hope everyone else is doing ok. Sorry x

HMLL
Member

Re: September 2021 Chemotherapy starters

I’m doing ok, having 1 week of feeling like I’ve got the worst hangover in the world. Then a week of feeling relatively normal. I have been doing the fast mimicking diet which I think has really helped. First cycle I did 3 days and day of chemo, 2nd cycle 2 days and day of chemo. Side effects wise, background nausea, fatigue, oral thrush due to dex, insomnia due to dex. Will ask if I can reduce my steroids this cycle. X 

Magenta59
Member

Re: September 2021 Chemotherapy starters

Hi @aliess @amy46 @Mrsmillie and everyone else here today. Hope you are all coping with the side effects. I find each day a little different! Not sleeping well and so just bushed, and I have a lot of pain today. I made myself go for a walk though as just sitting about is not good! I have also found myself breathless on occasion without any real exertion. One flight of stairs will do it! Also done some cooking etc so feel I am getting back to some "normal" duties.My mouth is still extremely sore and cracking at the corners-really bad so using lots of lip salve and some germolene. A dental issue is getting me down-all was fine before chemo and I did go to the dentist. So this has been brought on by the side effects I think. I may need to go back to the dentist again at this rate as I can't see it improving much over the next 5 cycles. My friend's husband lost a lot of fillings while on chemo-they had been fine beforehand so obviously it is weakening our teeth to some degree. All quite worrying!

Thanks for all the tips on stuff to watch-I will have plenty of time to catch up with lots of programmes I have saved. Had a laugh at The Grand Tour on Amazon Prime last night. A bit of complete silliness was in order!

I am going to drive myslf home to York tomorrow and have a normal week or so before the next cycle. And I will get my fresh air and exercise going back to see to my pony. I have missed my pony cuddles! I can take as long as I like as nothing much else to do. And I have equipped myself with a folding chair so I can take a rest when I need one.

Having a wig fitting next Thursday-I reckon by then my hair will be falling out, so can do a buzz cut in  readiness! My oldest school friend is coming with me-I think we will have a bit of fun! And a second opinion will be welcome!

Have a good weekend everyone. Jane.x

Lu_B
Member

Re: September 2021 Chemotherapy starters

Hi, everyone, 

good to hear your stories. I am on 4th day after 3rd EC, this time around with Zoledronic acid. Last three days tough with nausea, and actually headache and the flushes. I probably don’t realize the headache and carry on but will try tiger balm. I have to sleep during the day for an hour or so( that helps). I think I will be getting some time off after the next session to be able to rest.... too much going on. I am looking forward to tomorrow when I think my appetite will improve.

I am scared to not have the GCSF in case my blood count drops...

enjoy some peace and quiet this weekend everybody, xx

veestar
Member

Re: September 2021 Chemotherapy starters

Thanks for the tiger balm tip, I am trying that.. @HMLL 

my headache is so bad now I need to get seen by the team today I hope, it's been constant for 4 days. I went to work yesterday which may not have helped, but I m drinking masses of water, I m beside myself with this headache now.

Hope everyone had a good friday night.

x

aliess
Member

Re: September 2021 Chemotherapy starters

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We can get through, one moment, one step, one day at a time 💕

aliess
Member

Re: September 2021 Chemotherapy starters

Hi @amy46 

hope your daughter is ok. Glad to hear you made it another week to tick off 💕

aliess
Member

Re: September 2021 Chemotherapy starters

Re Netflix 

@Mrsmillie @Magenta59 

virgin river is a nice easy watch and dead to me is also good 👍🏻 

aliess
Member

Re: September 2021 Chemotherapy starters

@Magenta59 

That’s really good news 💕

aliess
Member

Re: September 2021 Chemotherapy starters

Hope you’re feeling better @Mrsmillie. I’ve been in the chair today so I’ll see if I’m also flush tomorrow. (Sounds like I’ve been on who wants to be a millionaire 😂) I asked the question today “if you have a side effect does that means it’s with you throughout” the answer was they come and go so that’s a bit of a relief. I was really breathless last night and today. I did recover slightly, I may have been over doing it. So lesson to self - just because you feel able, doesn’t mean you are. 
have a lovely chilled weekend ladies 💕

amy46
Member

Re: September 2021 Chemotherapy starters

@Magenta59 

I think not was on sky but I actually paid for it on prime as I was so keen to watch it and I thought it was worth it! Im

also watching vigil and the series sex education on Netflix which is so rude but very funny.

Hope you are feeling better and no more nose bleeds x

amy46
Member

Re: September 2021 Chemotherapy starters

@HMLL  

How are finding the EC?? I am having that next x

amy46
Member

Re: September 2021 Chemotherapy starters

@HMLL  I have a port and it settled down pretty quickly. It’s so handy not having to have a cannula each time I think you will be pleased you got it. Did they give you some numbing cream to put on before you go? Xx