67.9K members
1.2M posts
cancel
Showing results for 
Search instead for 
Did you mean: 

October 2020 Chemo Starters

Karen19
Member

Re: hiRe: October 2020 Chemo Startersi

Hi everyone,

 

So lovely to hear many of us are having or have had their last chemo sessions. Still lots of things to think about, but not worrying about the side effects of chemo must feel good 😘

Having my 5th round and Herceptin as we speak. Last chemo is in 3 weeks time. Don’t know about everyone else, but I am looking forward to the day I can enjoy a soft cheese, pâté and smoked salmon platter washed down with a glass of champagne! 🥳

Thank you for the book recommendations and insight into Radiotherapy and Covid vaccinations. It helps to know what everyone else is experiencing.

 

I’m still hanging on to my thinning eyebrows and eyelashes, but I know there’s a chance I will lose them even at this late stage. Is that everyone else’s experience? On a positive note my hair has been growing back on docetaxel. It is fluffy and non-descript in colour and I resemble a baby chick, but hey it’s still very exciting!!

Take care all and keep looking ahead to the future...x

chesterbrownbear
Member

Re: hiRe: October 2020 Chemo Startersi

Hi Unlydia, NAJ and all my October chemo friends

Hurray, no more chemo. The last docetaxel wasn’t too bad but no bell, just really tired and horrible mouth.  I’ll be happy when I’ve finished those pesky injection, my husband does try hard but they are painful, just 4 to go.  I’ve got an appointment with my oncologist next Tuesday, and I have many questions for him. I’m sure I’ll find out about my radiotherapy but I would like to know when to expect the Covid vaccine and when my immunity will start to improve. I cannot wait for my hair to grow back and my eyelashes to stop pinging off, the only trouble is there are no hair salons or beauty studios open to help.  Good luck everyone and thanks so much for your support.xx

 

Carmen Verandah
Member

Re: hiRe: October 2020 Chemo Startersi

Hi NAJ

 

Sorry to hear about the oral thrush, sounds horrible, hope it clears up soon.

I can’t imagine how I would  have coped home schooling my 3 sons, let alone while being treated for breast cancer, so hats off to you.

Thanks for the book recommendations, I’ve downloaded them both. I try to boycott Amazon as I think Jeff Bezos is rich enough, but I’m a bit of a hypocrite where it comes to my Kindle, I’m afraid.

I’m anxiously awaiting an invite for my vaccine. My mum (91) has had the Pfizer one with no ill effects.

 

Hope everyone else is doing okay. 

Carmen x🌻

 

 

 

 

York-75
Member

Re: hiRe: October 2020 Chemo Startersi

Hi NAJ,

congrats on the last one!!

hope you got to ring the bell. I’m sorry it is rough. But nearly done now!!

BTW re radiotherapy, mine was the left side and I could still have the 5 session treatment. I did the breath hold technique to help with it .

I didn’t think it was tricky- and they give you options depending on how long you can manage to hold it.

So I think you can still ask about it. I asked if it was suitable for me- not sure if he would have recommended it otherwise?

Guest user
Not applicable

Re: hiRe: October 2020 Chemo Startersi

Hi Karen,

Sounds like you're on the same regime as me.  3 Fec followed by 3 Docetaxel - I have my last chemo today.  The oral thrush is appalling.  I've had it so badly that this time I am starting the fluconazole on day 3 and taking it for 14 days.  I've noticed the fatigue is worse every time which is just rubbish with a special needs teenager and on line lessons.  I used to get paid for this much teaching!

I have been told I will have 15 sessions of radiotherapy starting no earlier than the 9th February - I think my oncologist said that's because it's my left side that is affected and the heart is on the left side.  I had a mastectomy in August and of course my tumour was grade 3.  It grew noticeably between my first and second biopsies.

I read a good book called 'I've Got Cancer What's Your Excuse?' by Ann Gildea this week and also the book The Complete Guide to Breast Cancer by Prof Trisha Greenhalgh and Dr Liz O'Riordan. The Ann Gildea book made me laugh out loud at times and there were a few things in there that I found really helpful.  The 'Guide' was very factual and written by two doctors who have both been through breast cancer.

I had to have a picc line inserted after the Fec and I'll be so glad to have it removed.  I think they might do that in a couple of weeks. 

York - I was offered a covid vaccine as a foster carer but they would only offer me the 20th or 21st of this month and since I've got chemo tomorrow that was a no go!  I asked if my daughter could have it in my place as she's a teacher and a respite carer for James but they said no. 🙁 

Um Lydia - great news.

Good luck to everyone.

NAJ XXX

York-75
Member

Re: hiRe: October 2020 Chemo Startersi

Hi there Karen19,

yes I am still on Herceptin. I’m not sure exactly who will be eligible for the 5 day radiotherapy, I think it has to do with how advanced the cancer was, so what stage, rather than grade. My was grade 3, but an early stage, so the 5 sessions was fine for me. 👍🏻

I had the covid vaccine -1st dose, 7 days ago. No side effects for me apart from a bit of a sore arm for 2 days. 
Apparently after 10 days your body has developed a good immune response, so roll on Thursday! 🥳

Karen19
Member

Re: hiRe: October 2020 Chemo Startersi

Hi York-75,

That’s so helpful to know and thank you for the advice. Knowing the end is in sight helps me tolerate the side effects. Each time I have a side effect I tell myself “I only need to feel like this 2 more times”! 

The timescales you mentioned were discussed with me back in August, but that was before I discovered I was HER2 positive and wondered whether that might change things. I recall that we are both having Herceptin injections so it’s good to know that I am still likely to be able to have 5 radiotherapy treatments. 


How did you get on with the Covid vaccine? I understand that we should all hear something this week....

x

York-75
Member

Re: hiRe: October 2020 Chemo Startersi

Hi Karen19,

Im sorry you are suffering so many side effects. Not too much longer to go!

 

I have started radiotherapy and I’m having the ‘fast forward’ type, just 5 sessions of a higher dose- the alternative would have been a lower dose for 15 sessions.

so far I have found in sleepy in the evening, but not really suffering any discomfort. Having had 3 sessions so far, my skin is not red yet, but I have heard it can come afterwards. I slather on aveeno cream after radiotherapy.

Generally my skin feels a little dry abd itchy, but that could be the tamoxifen. Nothing much else to report so far, so much preferable to chemo!

 

UmLydia, hand in there, I’m so pleased to hear the chemo has been working so effectively for you, despite the suffering that is great news! Xx

Karen19
Member

Re: hiRe: October 2020 Chemo Startersi

Hi everyone,

UmLydia, that’s great news about your tumour. It makes all the chemo suffering worthwhile! I had a lumpectomy at the end of August before starting chemo at the end of October. 

I had three FEC infusions prior to Docetaxel and have two more Docetaxel to go before I finish the course. The next one is on Wednesday.

I found Docetaxel made me more tired and my side effects lasted longer than FEC, but was so relieved not to have nausea and sickness! I had oral thrush once again and Docetaxel has also affected my stomach, making it bloated and unsettled for much of the time. I have also had nosebleeds and swollen eyelids!

Counting down the days til the end of Chemo and just waiting for my radiotherapy to be finalised. Does anyone know how long the Radiotherapy will last for or are we all different?

Hope everyone else is keeping well...x

UmLydia
Member

Re: hiRe: October 2020 Chemo Startersi

Hello everyone. Have most of you finished chemo? I had my third dose of docetaxel (chemo no. 5) last week. It wasn't as bad as usual although the tiredness is definitely getting worse. Spending more and more time in bed. My husband is around a lot because he is banned from working at the moment, due to restrictions. I am lucky at my hospital they offer sports classes, despite Covid restrictions. On week 2 and 3 it does me so much good. Get stronger. 

Good news I saw my oncologist and she felt the tumour and says she can't feel it at all. 

One more docetaxel before mastectomy. Starting to freak out big time about that. I don't classify for immediate breast reconstruction. 

Anybody else having surgery after chemo??? 

Chester brown bear hope your last chemo went OK!! So glad to hear you were feeling better last week. 

Hope you are all doing OK. 

UmLydia

chesterbrownbear
Member

Re: hiRe: October 2020 Chemo Startersi

Dear wonderful October Ladies

Thank you so much for your support and encouragement, what would I have done without you? Just to let you know I feel a lot better now after the blood transfusion but it did take 10 days.  York-75 it is so good to hear your experiences with both tamoxifen and getting ready for radiotherapy. I am a bit nervous about taking tamoxifen due to some of the side effects reported, so I am interested how you get on over the next few weeks.

Fantastic news Mrs Quincy, may it carry on 💕💕.

I’ve got my last docetaxel chemo next Thursday, and after that I’ll find out about radiotherapy.  Love to you all 💕💕💕💕

linflo58
Member

Re: hiRe: October 2020 Chemo Startersi

Hello everyone

i havn’t been on here for a while, but have kept up to date with the comments. Think I’ve been ‘quite lucky’ with the side effects compared ro some. I have my third & final Abraxane next week, which is in place of Docetexal. I have this with the Herceptin drugs. My legs have ached & I have a constant runny nose, which is so annoying, but in the big scheme of things......

it just confuses me the different treatments that we have. My tumour was 65mm & 4 lymph nodes infected. I had a mastectomy straight away, then 3 EC, followed by the Abraxane. I have to have Herceptin for 12 months every 3 weeks. I’m also having 15 sessions of radiotherapy. Others have chemo to shrink the tumour first. I wonder how the decisions are made. 

I must admit I’m ready for the treatment to end. I’m an upbeat, positive person but it does eventually wear you down. I know life isn’t ‘normal’ anyway at the moment, so we are not missing out on much. I still count my blessings that we can be treated & hopefully get rid of this terrible disease.

Love to all.

Linda xxxx

UmLydia
Member

Re: hiRe: October 2020 Chemo Startersi

That's great news Mrs Mcquincey!!. Very glad your chemo is working. 

York 75 that is interesting to hear about your radiotherapy. Keep us up to date. Mine is still far away but helps to hear your experiences. Luckily in France children still going to school, would have been very challenging to home school my three, bright 11 and 9 year old and energetic 5 year old while on docetaxel and looming mastectomy. It might still happen of course. 

I had third docetaxel yesterday. The oncologist felt the previously 7 cm tumour. I had the impression it had almost disappeared but he said he could still feel it and it is still about 5 cm. I felt upset but it HAS shrunk because my breast was deformed before and looks normal now. It is still deeper inside the breast. I see my regular oncologist Tuesday- see what she says. They sent a nice doctor lady to chat about how I am coping with side effects so that made me feel better. 

Hugs to everyone! It's freezing here in France glad I don't to go out driving on icy roads for work. 

 

York-75
Member

Re: hiRe: October 2020 Chemo Startersi

Thank you MrsQuincy, fingers crossed!

I was so scared of tamoxifen, having read so many bad experiences. It is very early of course, but it is a relief to not have experienced anything much straight away.

I thought I’d report back a bit, as it is the kind of thing that is part of the plan for many of us.

I am also getting the first Pfizer covid jab on Sunday, so I’ll let you know how that goes. Xx

mrsquincey
Member

Re: hiRe: October 2020 Chemo Startersi

Wow look at you York. Well done. I have heard some people really struggle with holding their breath I don't know if it's more of a anxiety thing. Hope it all goes smoothly. And I hope the tamoxifen is easy for you and that it just means you won't have many side effects x 

York-75
Member

Re: hiRe: October 2020 Chemo Startersi

That’s great news Mrs Quincy! 
makes it worthwhile to see such an improvement. 🤞🏻

Hugs to all those finding it hard, having complications and delays- hang in there. X

I have just got my tamoxifen prescription, had 2 tablets so far. Nothing much so far in terms of side effects, might attribute a touch of heartburn to it, being extra drowsy in the night after I have taken a tablet. This is not a bad thing, possibly stops me being woken up as much by the snoring husband! 👍🏻👍🏻 Early days of course. I was prescribed Tillomed- if I  keep having hardly any side effects I’ll ask the gp to specify the brand to ensure I can have the same each time.

I had my ‘marking up’ appointment for radiotherapy between Christmas and new year. I now have my first tattoos! 😆

3 tiny pinpricks of blue, they are hardly noticeable. I need to do the breath hold technique as my left side is affected. It was easy, should not be a problem. You need to be able to hold your breath for 20-25 seconds 3 times. I will get the ‘fast forward’ radiotherapy, so should just need 5 sessions. Which is good! I start on Wednesday, abd hope to start my phased return to work after that- along with the ‘joys’ of home schooling.

All teachers deserve a pay rise...

 

mrsquincey
Member

Re: hiRe: October 2020 Chemo Startersi

Heya lovely ones. Just popped on as realised I hadn't for ages. 

 

Happy New year ladies and let's hope 2021 is kinder to us all.

I am now half way through chemo. Finished 4 EC chemos and now on to docetaxel wither herceptin and prejta. I do hope it is kind to me. 

 

I had a mid way mri done after my 3rd EC chemo and have just got my results today. 

My lump was at 35mm is now shrunk to 12mm. So  65% gone. My dcis has all shrunk also.

 

I'm pretty happy with that x 

UmLydia
Member

Re: hiRe: October 2020 Chemo Startersi

Hello ChesterBrownBear

Hope you are feeling better, out of hospital. Docetaxel is tough. I still have two more sessions left. 

Carmen Verandah ha ha so funny our social highlight of the month is going to get poisoned. And I'm so excited to see my surgeon about mastectomy at the end of the month. He's really lovely i hope to get it over with soon and stop worrying they will cancel my op. I know its not likely but hard not to think it sometimes. 

At least we are not missing anything while treatment ! 

Big hugs to Naj hope you ok. 

Happy new year everyone

 

Carmen Verandah
Member

Re: hiRe: October 2020 Chemo Startersi

Hi ChesterBrownBear

Sorry to hear about your ordeal, sounds like you have really been through it and I hope you are feeling a bit better. It does make everything so much harder not being able to have anyone with you in hospital.

I’ve got 3 eyelashes on my right eye and none on my left, and very patchy eyebrows, not the best look 🙀

Great that you’ll be done with chemo next week 👍! I’ve got 7 more weekly doses, but going to be poisoned once a week is one of the few activities open to me in lockdown, and the staff are really good.

It will be good to hear how the radiotherapy goes, as I’ve got that coming up in March.

 

Onwards and upwards! Keep strong 🎈🌞

Shi
Community Champion
Community Champion

Re: hiRe: October 2020 Chemo Startersi

💪💪💪💪👭👭👭chesterbrowbear ❤️❤️We’ve got your Kylie gold hot pants and are holding on tight to you 👭👭💪💪💪💕💕Shi xx

chesterbrownbear
Member

Re: hiRe: October 2020 Chemo Startersi

Hiya All you lovely people. I’ve not faired to well with Docetaxel, the excruciating pain I had in my back, the feeling my nails are going to ping off, passing out and the extreme exhaustion.  I had to have a blood transfusion on Tuesday, where I nearly passed out again. It’s such a shame you have to be on your own in hospital as that makes it so much worse.
Im lucky I must have about 10 eyelashes 😀, but yes my eyes are a bit gunky too. My last chemo is 14th January, hurray the end is in sight, rock on radiotherapy ( if it’s not cancelled because of COVID). Stay strong 💪💪💕💕

 

Guest user
Not applicable

Re: hiRe: October 2020 Chemo Startersi

Hi UmLydia,

Chemo went ahead this Tuesday.  They reduced my dose of Docetaxel but the oral thrush has kicked in even earlier which is fairly miserable.  I started the fluconazole today (day 5) but day 3 might have been better and I have 10 days worth to take.  Like you I've now lost almost all of my eyelashes.  I was only achy for a day or so and thankfully my nails look fine though I was a tad concerned for a short while after my first Docetaxel.  I do feel way more fatigued as time goes on so I wasn't thrilled at 6.50am this morning when the smoke alarm decided it's battery was running out and I had to trek to the basement for the ladder then up to the third floor to remove it.  No peace for the wicked.

Sugapiesan - No nausea of any kind with Docetaxel so that has to be a bonus.  I can rest for the tiredness, the achy joints didn't last long, I was expecting my eyelashes to fall out anyway and my worst thing has been the oral thrush.  It's different for everyone!

Happy New Year to everyone

NAJ

UmLydia
Member

Re: hiRe: October 2020 Chemo Startersi

Hello Sugapiesan

Docetaxel makes me feel achy, pain in joints and muscles, very tired and i got thrush around my bum which was a bit of a shock. Also i have lost my eye lashes and have a gungy eye (blocked tear ducts). If you scroll down there are a few posts describing the effects. 

But it is different for everyone. The doctors seemed to think it would give me diarrhea but i haven't had that at all yet. 

The good news is no nausea! 

Good luck hope it goes well. 

xxxx

Umlydia

UmLydia
Member

Re: hiRe: October 2020 Chemo Startersi

Hello Naj, how are you doing? Did you go forward with next chemo treatment? Maybe they are decreasing the dose to protect you from sepsis happening again hope it goes better this time. 

Docetaxel affects the nerves in hand and feet and the nails. Hope your thumb nails are not falling off.

My thrush cleared up with the cream, i get nasty taste in my mouth as well. I have lost most of my eyelashes and have a grungy eye, i get that a lot. I definitely feel much less energetic even in the second week after treatment. 

So sorry you had to self isolate over the Christmas period. 

Sending big hugs. 

Umlydia

Sugapiesan
Member

Re: hiRe: October 2020 Chemo Startersi

Hi Jo,

I’ve hopped over from November chemo starters to get some pre warning on what is to come next for me. I’ve just had the third and final dose of EC and feeling pretty low and head very fuzzy. I wanted to know what Dotaxel will be like as I have three rounds of that next, again with three weeks in between, any insights you have would be helpful for me to mentally prepare. Hope I have the name of the drug correct! 

Guest user
Not applicable

Re: hiRe: October 2020 Chemo Startersi

Hi everyone and Merry Christmas for tomorrow,

My chemo was cancelled due to me having contact with a confirmed covid patient.  I do feel a bit cheesed off because my test was negative and I was told I didn't need to self-isolate and chemo would go ahead - this from the ward consultant.  On Monday my oncologist rang me to discuss how the first docetaxel had gone and she said I should have been told to self-isolate for 14 days - great - I'd been home for a week by then being careful but not to the standard demanded by self-isolation.  I'm slightly concerned that my picc line won't get flushed through for 15 days after I'd been told it should be done weekly.

Umlydia - I had terrible oral thrush this time - the worst I've ever had it.  I've been told that next round the fluconazole will start on day 5 rather than day 8.  I was given Nystatin at the hospital.  It has gone now thank goodness but my taste has been badly affected and almost everything tastes awful.  I also had aches and pains that weren't too bad but my thumbnails hurt and one of my toenails is really painful - odd.  They are going to reduce my dose of docetaxel.  The problem is that we don't know whether the complete exhaustion was due to the drug or to the sepsis.  

I hope that everyone has the best Christmas possible.  

NAJ xx

 

 

Karen19
Member

Re: hiRe: October 2020 Chemo Startersi

Hi Umlydia,

 

So sorry to hear about your problem. It sounds awful. Like you, I get oral thrush after every treatment and have had to take a course of Fluconazole each time. I wonder whether this could also be used for your problem, but your rapid response team will know the answer. Your symptoms also sound like your condition may be piles which can arise if you have had constipation?

I really hope that you can get something to treat it ASAP and that you are able to enjoy tomorrow.

Merry Christmas and take lots of care x

Shi
Community Champion
Community Champion

Re: hiRe: October 2020 Chemo Startersi

Please ring your rapid response it might need antibiotics ASAP, please keep safe ❤️ Remember during chemo it’s not like normal and you always needs to rapid response everything to your team to ensure you get safely through ❤️💕💕Shi xx

UmLydia
Member

Re: hiRe: October 2020 Chemo Startersi

Hi everyone

Got an unchristmassy message, has anyone had (this is gross and horrible ) anal thrush? I think I have it, sore and itchy and throbbing... i saw my GP yesterday but i was too embarrassed to show him, so i described my symptoms and he prescribed an antifungal cream. But at the moment it is getting worse not better..... pretty miserable and embarrassing.  I do have it in my mouth as well but it doesnt bother me so much and i have a mouthwash that works... are there any pills i can take ? 

Luckily i am going to my inlaws for xmas (they haven't banned it in France but do try to make you feel guilty for seeing your family ) so the kids will be fed and entertained. I will fade into the background. 

Feeling run down after second docetaxel but this time at least don't have aches and pain... only bum thrush 😞 (I think)

Hope you all well and managing not to get depressed with the new corona measures. 

Big hugs. Merry xmas. 

Karen19
Member

Re: hiRe: October 2020 Chemo Startersi

So pleased to hear that everyone seems to be in a better place than they were at the start of the week!

York-75 amazing that you have finished your chemo. Must be such a great feeling. x

I start docetaxel and herceptin between Christmas and New Year. Hoping they are kinder than FEC which made me really sick and dizzy all the time.

Stay safe everyone and make the most of the days where we don’t have the dreaded side effects.

So looking forward to a “normal” post treatment life 🥳

x

UmLydia
Member

Re: hiRe: October 2020 Chemo Startersi

So glad you are home NAJ!! What a relief that must be. Hope you starting to feel better.

Congratulations York 75 on ending chemo. So happy for you. 

I'm having second round of docetaxel. Feeling reassured because the oncologist said the exhaustion and pain was probably an effect of the immunity injections as much as the chemo and that the explosion of white blood cells can cause symptoms like i had. 

 

chesterbrownbear
Member

Re: hiRe: October 2020 Chemo Startersi

Not a Jockey, I’m so glad you are home, at least you can rest better there. Yes I had docetaxel the same day as you, my next 1 is Christmas Eve 😬, at least I shouldn’t feel too bad for Christmas Day and Boxing Day, but no alcohol 😮. On a lighter note, the other day my whispy bits of hair needed a trim. I got out the hair trimmers, and last time I used no 8, which is about an inch long. Well I started and did about 3 strokes and thought wow my hair has grown quite a bit. Then I looked at the trimmers and I forgot to put the guard on, so I have 3 hedgehog stripes 🤪. The thing is I didn’t get upset, because my hair looks terrible anyway, so I just put the guard on, and carried on.  MERRY CHRISTMAS TO YOU ALL, and look after yourselves🎄🎄🎄🎅🏻🎅🏻🎅🏻🎉🎉💪💪

Jo22
Member

Re: hiRe: October 2020 Chemo Startersi

Congratulations York75!

Hope the radiotherapy & tamoxifen goes well. 

Keep in touch! 

Jo xx

York-75
Member

Re: hiRe: October 2020 Chemo Startersi

NAJ I’m so glad you are home!

wWhat a scary ordeal for you, no wonder you are pleased to be home. Xx

 

Well I had my last chemo today (I had 4 rounds of nab-paclitaxel) and got to ring a bell and everything. I dinged it a bit too hard and a nurse jumped out of the room next door as I gave her such a shock. 😆

I brought in some chocolate and nice coffee for the staff. It feels like a bit of a cheat to get to ding the bell already, as I have to keep going back for Herceptin injections, but that will be quick, and I don’t need bloods doing each time. Radiotherapy and tamoxifen from January, and off I go. Onwards and upwards! X

Guest user
Not applicable

Re: hiRe: October 2020 Chemo Startersi

Hi Everyone,

The shouty patient with covid was moved late on Monday and I can't tell what a relief it was to everyone on the ward.  I was sent home from hospital yesterday after a negative rapid covid test and because my infection markers had dropped enough for them to let me home with another 7 days worth of antibiotics.  

For me docetaxel was pretty miserable.  Had my chemo on Thursday 3rd, felt great until the Monday when my energy levels fell off a cliff and I got the dreaded oral thrush.  After spending almost 36 hours sleeping I then went to the chemo bus on Wednesday to have my picc line flushed and they took my temperature and sent me off to hospital.  I don't really know if the exhaustion was due to the drugs or to the sepsis because I felt like that the last time I had it.  CBB - I had exactly the same thing with my nails - particularly my thumb nails - weird.  So glad to be home and just resting in peace and quiet.  Next dose on 23rd.  Hoping for a better result next time.

Good luck to everyone.

 

NAJ xxx

Shi
Community Champion
Community Champion

Re: hiRe: October 2020 Chemo Startersi

Teary not testy 🙄 sorry text gremlins 💕💕Shi xx

Shi
Community Champion
Community Champion

Re: hiRe: October 2020 Chemo Startersi

Chester brown bear ❤️❤️ Docetaxol can may you weepy, I remember it made a few of us but more testy, some people sail through docetaxol other it’s another challenge that you will kick its arse, it’s just it can kick yours first before you get your boots on a kick it back ❤️ Sending ❤️❤️💕💕Shi xx

UmLydia
Member

Re: hiRe: October 2020 Chemo Startersi

Chesterbrown bear that must have been frightening to pass out like that. I can understand not wanting to go to hospital, unless you really don't have a choice. Its good you didn't.  

I felt depressed and cried on docetaxel and I wonder if it is the effect of coming off the steroids as well. In any case it is miserable and tough. Yesterday i actually went to an excercise class organised by my cancer hospital (muscle building!), it was great. Too hard for me i felt sick and had to stop (embarrassing-plus all the other ladies were older than me). But i still feel more energetic today. 

Enjoying the last days of feeling ok before Friday next docetaxel-still 3 to go. At least i know what to expect this time. 

chesterbrownbear
Member

Re: hiRe: October 2020 Chemo Startersi

Hi all

oh dear Not a Jockey I feel so sorry for you, chemos bad enough, let alone what you are going through.

I haven’t been on this page for a while as I wanted to end my post on a positive note. On 3rd December I had my first Docetaxol session, I have been quite apprehensive as again it’s the unknown.  Same as before the Friday and Saturday I didn’t feel too bad, but Sunday morning after breakfast, I passed out. My poor husband hand a clue what was going on, he laid me on floor with a pillow under my head  ( not in the recovery position), and I eventually came round. We did call the hospital, and after taking my temperature they suggested I went to a&e. I know I should have gone but the coronavirus does worry me.  We decided if I had another funny turn I would then go.  After that the symptoms are flu like and exhaustion, plus it feels like finger nails are being picked off ( but they are still there). I also have felt really depressed, and I’ve been on the phone crying  to Macmillan. Yesterday was the first day I managed to go for a short walk, so recovery is taking longer but at least I am again getting there. 
Everyone please look after yourselves, and have a lovely safe Christmas 💪💪🎄🎄🎅🏻🎅🏻💕💕

UmLydia
Member

Re: hiRe: October 2020 Chemo Startersi

NAJ that sounds so awful and shocking. Can you not threaten to sue them? Anything to get them to react. How can they leave a covid patient in the same ward as you? I feel really sad and angry for you. It must have been bad enough putting up with the shouting and the abuse you got from the manic one... but this is too much. Its dangerous. Fight back. Tell them you are really legitimately worried and this is not acceptable.  

Hope at least you are starting to feel better and can get out of there like a bat out of hell.... 

Sending you hugs and more courage even though you are so brave already , really really hope you get back home very soon. 

Umlydia

 

Shi
Community Champion
Community Champion

Re: hiRe: October 2020 Chemo Startersi

Naj ❤️ Any chance they can give you mask and pull curtain round you 🤞🤞you get home soon 💕💕Shi xx

whiters14
Member

Re: hiRe: October 2020 Chemo Startersi

NAJ

It sounds like you are having a really rough time of it and now covid on the top of it.

Fingers crossed you are home soon x

Guest user
Not applicable

Re: hiRe: October 2020 Chemo Startersi

Thankyou everyone for your kind wishes which I really appreciate. 

Unfortunately the shouty patient in the bed next to me has tested positive for covid. You couldn’t make this up. 

There is no bed for me in the Macmillan unit and they still haven’t moved her. Because of her dementia she won’t wear a mask. Definitely feeling vulnerable. 

NAJ xxx

Shi
Community Champion
Community Champion

Re: hiRe: October 2020 Chemo Startersi

Naj can you pull curtain round and stick some headphones on and stress that you would appreciate moving to another ward as soon as possible and you understand it’s difficult but you need to rest and get well yourself and don’t need constant unrestfulness around you. It’s knackering enough having stint in casa nhs without all the additional drama you are also unfortunately dealing with while in there too ❤️Sending ❤️👭❤️💕💕Shi xx

Jo22
Member

Re: hiRe: October 2020 Chemo Startersi

What a shame SU, I really understand the wish to get out and do something normal and as you say you protected yourself as best you could. Hope your symptoms are mild and you feel better soon. xxxx

Jo22
Member

Re: hiRe: October 2020 Chemo Startersi

Crikey NAJ, that sound's like a nightmare. So sorry you are going through that. Fingers crossed they let you home soon. xxxx

Jo22
Member

Re: hiRe: October 2020 Chemo Startersi

That's awesome York-75, you sound really upbeat!

My husband had radiotherapy for prostate cancer and he was nowhere near as tired as me going through chemo so your oncologist is probably right, albeit flippant! lol

Re the vaccines I'm pleased you have said that as I was worried they would force us to have it and as it hasn't been tested on anyone clinically vulnerable, I am not ready to be a guinea pig yet. Please don't get me wrong, I am not an anti-vaxxer at all, just happier to stay indoors isolating until my body is strong again.

I'm really pleased your end is in sight York-75, you're nearly there !!! xx

Guest user
Not applicable

Re: hiRe: October 2020 Chemo Startersi

Ok so P had mania and literally gabbled all day. Started at 5.30am and was moved at midnight. She decided I had alopecia and was taking up a bed unnecessarily and roundly abused me at high volume. The staff were mortified and it did take its toll and I got a bit tearful - I’d be thrilled to have alopecia rather than cancer and be on chemo. A few hours of peace (not counting the 4 hourly obs and IV antibiotics) before F was moved onto the ward. She has a chest infection, SHOUTS constantly - never more than a seven second gap. Starts when the first meds round begins at 5.30am and just goes on and on..... The staff are run ragged and apologetic but what can they do?  No space on the Macmillan unit for me. Not sure the stress is helping my recovery. I do feel like I have a bit more energy and my temperature is heading in the right direction so this is good but I will be more than glad to get home. 

Love to everyone. 

NAJ xxx

York-75
Member

Re: hiRe: October 2020 Chemo Startersi

Hi everyone, 

I spoke to my oncologist this week, and asked about the covid vaccine. As an NHS employee I should be in round 2 of the priority list, so I’m hoping that when my trust gets a supply, it won’t be too long until I am offered one. We don’t have any yet- guess it depends on supply.

The answer was: In the chemo cycle itself they don’t want you to have it, as your immune system will not be strong enough to give an immune response. As in, your body won’t be able to create the antibodies. (I hope I explained that right, I’m not medical.) 

But you can have it after, so 3-4 weeks after the last chemo. I have my last one on December 16th, and the chances of me offered the vaccine before 6th January are slim. So fingers crossed I’ll be allowed to have it when I get it offered. 
I know many of you have a longer period of chemo to go, and I hope it passes quickly. Hang in there, you can do it!

I was also told I would be suitable for the fast forward radiotherapy, so I get 5 sessions, one week, instead if the usual 15 sessions. 
So depending on the dates I get offered for radiotherapy, I hope to start my phased return to work in January. I am simultaneously looking forward to it and feeling a bit apprehensive.

I said I’d heard some people get very tired from radiotherapy. The oncologist said that was probably people who hadn’t experienced chemo! I know he was just being a bit flippant- not wishing to invalidate the experience of others, but rather saying that the majority cope fine, and it is much easier than chemo. So I hope he is right about that.

I feel like the end is in sight. I know I’ll be one of the first if us to say that- but I hope you may feel comforted to hear that it feels really positive and exciting. Like a second chance I never knew I’d need.

Yours will be here soon, love to all!

York-75
Member

Re: hiRe: October 2020 Chemo Startersi

Hi the NAJ, how are feeling?

Getting sepsis a second time is really rotten luck, I’m so sorry. How many days to go now? It is really impossible to sleep well in hospital, isn’t it? I hope you have earplugs and an eye mask, that can help. Or if you have those little sleep hats, I find I sleep a bit better if I pull it down over my eyes! 😆

I wish you a speedy recovery! X