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September 2021 Chemotherapy starters

Rae45
Member

Re: September 2021 Chemotherapy starters

@veestar I am on the same regime as you. I have just done number 10 of 12 which was my last pax although I have missed two carbos due to bloods being too low. I hit a wall last week too. All I can say is look how far you have come, you are over half way. I also go on to EC next and am really nervous about the change in drugs as I have heard EC can be harsher for some people (while others have said the opposite!), but the weeks are going quickly and each week is a step closer to the end. Stay strong, weekly treatment is relentless and we will no doubt hit walls again but slowly we are ticking them off. I have never thought to ask why there is the change in drugs either so would be interested to hear if anyone gets an answer on that.

xx

Somerset Bunny
Member

Re: September 2021 Chemotherapy starters

@veestar Hang in there lovely we are all here for you. I can totally sympathise with you though I have my 4th round this coming Wednesday new drug for me to docetaxel (been informed it is the less pleasant of the two they prescribed for my treatments) I am dreading it and fed up with the hamster wheel of treatments and picc line flushes (especially the chemo: week or two of feeling like shit follwed by a week of relative normality only to go back down again after the next dose) really messes with your head, I am with you at that wall. As to why the different drugs I do not know maybe its something I should of asked about to, I just want to be reassured all this crap they are putting into us is doing it’s job, a question definitely for the oncs call on Monday. The only thing that is keeping me going is the end date, and the realisation that at some point this shit show finish. Also hoping to God radiotherapy is a little kinder. Sending you lots of love and hugs xxxx

veestar
Member

Re: September 2021 Chemotherapy starters

Hello everyone,

Happy friday.

I hope everyone has had a good week. I hit a wall I think they call it and I m fed up with chemo now, I ve done 11 sessions of the paxil and carbo, 1 more week to go then the new routine of EC. I haven't asked my oncologist why the different drugs, daft of me. I should do. Does anyone know why a different chemo drug, I think a few of you lovely ladies are on the same as me.

Verityx

Magenta59
Member

Re: September 2021 Chemotherapy starters

Hi @aliess and everyone on here today,

Yes it's weird but nothing tastes right does it? I can only occasionally manage a weak coffee, and even my mint tea tastes odd. sucking mint imperials gives a bit of relief from it-it's just so bitter and disgusting I am conscious that it is making my breath bad? Not sure as it's hard to tell! Yuck!!! 

Keeping hydrated on Ribena with fizzy water, and Lucozade original still tastes fine, and as I love the stuff, I feel I can justify increased consumption, lol! The days i don't feel much like eating a lot, especially. Pain last night kept me awake for most of it-everywhere hurt, slight pressure anywhere was awful. Just taking paracetomol/ibuprofen or co-codamol which will be on the cards tonight as it's not easing to any great degree. Just sitting down hurts today. Hope this passes soon as I would like to be home Monday to tidy the garden before the last garden bin collection of the year! Wishful thinking at present! I got up for the loo at 8am, took more painkillers and went back for another 2 hours! Not like me at all! Have done nowt today except needlework project and being on the computer. What a life, eh? Give me strength!

I want to be back on pony duty Tuesday as full livery fees are breaking the bank.....can't believe at times what has happened to me and what is yet to come.... you don't envisage yourself in this situation. And with secondary BC, life will never be the same again. I have to adapt to the "new" normal and accept my limitations, instead of as before, pushing myself to breaking point. Work is not the be all and end all, and I am going to have fresh priorities in future. When your time on earth is limited, why spend the rest of it working yourself into the ground? I will just do enough to get by, and have more free time for myself, the family and my wee mare while I still can. This whole experience has made me take stock of what is important to me, and work is in about 4th position now!

Have a good weekend everyone,

Jane.x

aliess
Member

Re: September 2021 Chemotherapy starters

Hi @Magenta59 Jane

so sorry you’re in such pain! Maybe ask the nurses if you can try different painkillers?  And yes the fatigue is really ramping up now. 
Ive found that it’s sugar I can’t taste and it makes such a difference to most foods. 
I decided to avoid things I usually like as I don’t want to be put off them for life. I can only drink orange and mango squash ( even water tastes bad) and find that foods with tomatoes like pasta taste pretty much the same. Most things just taste so salty.  
after a two week break I can manage a cup of tea again though even that tastes salty! 
💕

Magenta59
Member

Re: September 2021 Chemotherapy starters

Hi @Mrsmillie @aliess @Somerset Bunny @veestar and all of you ladies on this thread.

I have to agree with you about the vile taste-I am on NAB Paclitaxel and it's just vile. NOTHING tastes right does it. I have had different side effects this time-running to the loo afternoon and evening of chemo as it started quite quickly to affect me, but since then now constipated so on the OJ and prunes! You can't strike a balance here! Worst thing is the fatigue-I am done in by 6pm-and the joint pain is relentless. Also lots of stabbing shooting pains in my surgery boob which are really nasty! I was in bed at 6.30 last night with painkillers. They didn't do much good so I took more at 8pm-I had clearly not had enough! Feel a bit better today thank god.

Hope you are all okay. It's relentless this treatment but what choice do we have? Another early night for me, it's getting dark here already and that doesn't help! Managed a walk yesterday morning before the pain knocked me for 6, but have just given in to it all today. Done some tapestry and a few chores and that's me done for the day! It's pathetic how little I do these days and still have no energy!

Keep it up ladies!We are getting there!

 

Jane.x

Mrsmillie
Member

Re: September 2021 Chemotherapy starters

A few weeks ago I really fancied a nice cold glass of my favourite fizz, took one sip, it tasted like pure vinegar 😝……oh well, it’s  back to the fruit tea and the metallic tasting water 😂.

xx

 

aliess
Member

Re: September 2021 Chemotherapy starters

@Mrsmillie  it now 3 weeks since I had paclitaxel due to an infection and I’m not due to start again till next week. I can tell you that my taste buds have recovered slightly! No sore mouth or nose bleeds. I’ll be well in the way to recovery only to start again 😫 but at least I know what to expect in terms of recovery at the end. My finish date has been pushed to 24th dec. 

hope your next treatment isn’t so bad.

💕

Somerset Bunny
Member

Re: September 2021 Chemotherapy starters

Thank you for your support re Christmas @Magenta59 and  @Mrsmillie  😀 and so sorry to hear about your cat, I had to let my 11 year old rabbit go over the rainbow bridge a week before I started chemo and I still miss him, I doubt like you though I will replace him as he was so unique.

@veestar so glad I made you laugh...it's often what I do when it comes to family dynamics! 😂 In answer to your question yes I have had the odd tipple (prosecco) I was warned it would have more of an effect on me (I always was a cheap date anyways, I'm normally the one who ends up driving) and boy did it, only had a quarter of a normal small single helping bottle and it went right to my head, had to have the rest in stages with orange juice...took me back to my teens 😂 I will be raising a glass of sparkling mineral water Christmas day as at the moment it's all I can face, my taste has definitly left the building after round three! Sue xx

 

 

Magenta59
Member

Re: September 2021 Chemotherapy starters

Good afternoon @Somerset Bunny @veestar and all the other ladies on this thread. I haven't posted in a while but do check in with you now and then. I had round 3 yesterday morning 10am, and was all done by 11.30! Poor lady who started with me at 10am hadn't even begun when I left-they couldn't get her cannula in-3 different nurses had had multiple attempts with no luck. Glad I have prominent veins-they just couldn't find hers despite the hot water bowl etc. What a performance she has, every time she goes. Just awful. She looked sick with the repeated attempts to get the needle in.God knows if they ever succeeded!

Strangely enough I feel okay today, as last night felt iffy as the diarrhoea was'nt long in kicking in. So far so good today-I have not needed the loperamide yet after a substantial quantity of them yesterday. I am not holding my breath as it may be a different matter later!

@veestarhope you are picking up today-the fatigue is dreadful. I have felt like I was improving after a few days, only to feel wiped out a day later. Just take it easy and chill out if you can.

@Somerset Bunnythat is not great having your treatment right before Christmas, but you have a valid excuse to have a quiet one with no visitors. No-one should be expecting you to accomodate them at all when you are A.feeling rough and B. trying to shield. If it offends them, tough! People are just so so selfish and so dim! Relatives or not, they must show some understanding for your situation, and as you say, if not they can bugger off! I could certainly have done without my ex's mother at the best of times, sanctimonious old bat! Never mind when you are going through all this! You totally have my support!😏

I should be fairly good intime for Christmas as my next round is 6th Dec. It will be New year when I could potentially be feeling crap as chemo will be on 28th Dec. This does not bother me at all as we never go overboard at New Year anyway. I will have a quiet one over at the coast with Chris, and hopefully fireworks will not be going off all night there. In York it's difficult to get any sleep as morons are still setting them off until 4am! Arounf Nov 5th it is like Beirut for several weeks. Does my head in. I have largely esaped  it this year, being with Chris recovering from round 2 and it was fairly quiet here. My poor cat at home, was freaked out apparently, and it's so unfair as he was already ill. When I got back home last time-delayed as my two kids had rotten colds-I decided it was time for him to go over the Rainbow Bridge. He had a tumour in his head, so we knew his time was short. He was having upper respiratory tract problems and was snuffling and sneezing a lot, plus occasional bleeds from his nose. Poor little guy was PTS last Wednesday. So sad, he was a lovely affectionate cat and everyone's friend. I miss him so much. We will get another rescue cat when chemo is over. It's so weird without him.

At least my pony is well, and had been giving her carers a bit of grief by escaping from her electric fenced enclosure. I was strip grazing her in her new paddock to prevent her gorging on new grass and getting fat! She was just pushing it over trying to get to more grass-she is a greedy little mare! So her punishment is being made to wear a grazing muzzle and no rug to stop further breakouts! I took the enclosure down so she has the full paddock, but can only nibble instead of pigging out! She seems quite happy with the arrangement, and is back to eating her feeds which she had been leaving due to being full of grass. Feeds essential as all her supplements are in there! We had a nice week of rides and she is getting quite a bit fitter now. So all good there. See picture attached of her ready for action!

Have a good week everyone and hey we are getting there! I am half way through now and feel I am making progress after a bumpy start. Good luck to all of you having chemo this week. Hope it all goes smoothly for you.

Jane.x20191009_100112.jpg

veestar
Member

Re: September 2021 Chemotherapy starters

Somerset bunny, your post made me LOL..

Mentioning christmas, hilarious the family politics etc..

I am kid free on xmas day its my ex husband's turn to have the kids so I have found another kid free mum to hang out with and plan to eat pizza and have bubbles.. I haven't had a sip of booze for over 2 months now so feel the need on xmas day.

Does anyone have the odd tipple? my chemo book actually said it does help to relax and take mind off it.. but chemo feels like a bloody hangover anyway.

Veexxx

Mrsmillie
Member

Re: September 2021 Chemotherapy starters

Good morning all,

It does seem like we are all having a bit of a struggle at the mo. I had a week off last week because the side effects which usually last 2 days decided to linger and linger, particularly the horrible taste making food and drink taste disgusting, nausea, headache and  an achey stomach, so the thought of having another session worried me. Foolishly I thought I would feel nice and fresh for tomorrow’s session but I haven’t picked up as much as I hoped, did force myself out yesterday to take dog for a walk but that’s about as active as it gets, but feel I have to make the effort, going for bloods this afternoon, I suppose as long as they are ok it’s fine to go on.

I’m with you on the Christmas thing @Somerset Bunny I have 4 grandchildren, 2 have birthdays around Christmas, so I’m just concentrating on getting all gifts sorted for them, everything else will fall by the wayside! I’m due to finish paclitaxel on 9th, but based on the way I’ve been feeling it may take more than 2 weeks to start to feel anywhere near ‘normal’, so I won’t be making any big plans!

Fingers crossed we all feel some improvement very soon. Have a good day everyone, love to all xx

Somerset Bunny
Member

Re: September 2021 Chemotherapy starters

Good morning lovely ladies,

From comments on here despite most of us being half way through this shit show it appears we are all struggling. @veestar I can totally feel your pain regards feeling wiped out after chemo, I felt like pants after my third round last Wednesday, definitely took a couple of days to get back to some sort of normal, what ever normal is now. I’m back on the filgrastrim  injections which I hate. They make me constipated…four days no movement…not good when you also have a prolapse! I will be having a word next appointment for sure. @aliess  hope you are on the mend and on top of your infection, been thinking about you a lot xx Getting fed up with all the talk about Christmas, don’t know whether you are all finding the same I have a round two days before and have told relatives they can all bugger off if they think they can come a visiting, some are understanding others are predictably selfish, never thought chemo would be the excuse I would use to get out of seeing my monster in law on the 25th Dec. One thing is for sure you certainly find out who can rely on when going through this shit as you’ve probably gathered she is not one of them 😂😂. Anyways back to another day in paradise, my latest dilemma what to have for breakfast which a. will be fibre rich and b. More importantly I can taste. Lots of love. Xx

veestar
Member

Re: September 2021 Chemotherapy starters

Its the same rountine for me, we can all do this together. 

I am so tired today after chemo today..

 

Veestarxx 

veestar
Member

Re: September 2021 Chemotherapy starters

Hi 

louby lou, have you got some codeine ( prescription one) for your headache its a wonder drug for a headache.

x

CT2021
Member

Re: September 2021 Chemotherapy starters

Hi @louby_lou69 and you other lovely ladies!

Pleased to say feel much better today - still got a headache and tired but nothing like the other days. I think my skin is a bit sensitive - my collar bone on the other side to the cancer was uncomfortable and I was starting to overthink but I can see some white spots so think have got some kind of dry skin/rash. Anyone got dry skin or little rash or pimples?!

How is everyone doing?xx

 

Rae45
Member

Re: September 2021 Chemotherapy starters

@amy46 that is a really sensible attitude. I guess all we can do is take it as it comes a day at a time and as you say, a step closer to the end of treatment. Xx

Shi
Community Champion
Community Champion

Re: September 2021 Chemotherapy starters

Aliess 💕keep focused 💕💕 step by step better to get through chemo safe ❤️ Chemo gives everything such a whallop. Step by step you are doing amazing and treat yourself when chemo done to something you want, focus on that finish date and what you are going to have as a treat 💕 mine was bottle coco mademoiselle intense as my finished chemo treat 😁 💕💕Shi xx

amy46
Member

Re: September 2021 Chemotherapy starters

@Rae45  hi I’m doing the same as you, Paclitaxol and Carboplatin first then EC. I have found it ok so far, last Paclitaxol this coming Thursday. Felt a bit rubbish with the third and fourth lots of Carboplatin but still able to do pretty much everything. Also slightly dreading the EC but there have been lots of things that I was worried might happen but actually haven’t so maybe it won’t be too bad. Also the end is in sight so maybe that’ll help 😊🤞

aliess
Member

Re: September 2021 Chemotherapy starters

Hi ladies

hope you’re all well. I’ve been reading but not posting as I’ve been quite poorly with an infection. Been spiking temperatures on and off for a couple of weeks now 38degrees plus.  Had 5 days of antibiotics and just started another 5 days. Just had a telecon with consultant and he’s cancelled the next 2 chemo sessions (already missed last weeks). 
you’d expect I’d be pleased about this but we all have that finish date to aim for and mine is now Xmas eve.

Ho Ho Ho

💕

Rae45
Member

Re: September 2021 Chemotherapy starters

@louby_lou69 I am on the same as your friend and I have found it the same as her so far.  I move onto EC after 4 cycles of this, sounds like that is a lot tougher. 😕

Hope you all have a good week.

Xx

louby_lou69
Member

Re: September 2021 Chemotherapy starters

@CT2021 

I found cycle 2 hard so I'm  expecting cycle 3 (on the 16th) to be harder still.

I have a friend whose half way through weekly paclitaxel with carboplatin every third week. She says the paclitaxel is not as harsh, she does feel worse on the weeks with the carboplatin though but she doesn't feel as tired and bounces back much quicker. 

I'm hoping this is the case as I start weekly paclitaxel on the 7th December with Herceptin every third week. I don't know if I could do 6 EC. 

Hope you begin to feel a bit better over the coming days. 
Lou x

CT2021
Member

Re: September 2021 Chemotherapy starters

OMG day 8 of third round of EC and I’m feeling it. I just wanted to sleep but when I woke up didn’t feel much better just glad some time elapsed! I have a constant headache and feeling a bit sick, nothing tastes right.

i have 2 kids under ten so my poor husband has been run ragged all weekend.

im just hoping this passes soon. I start weekly pax and 3 weekly carboplatin in a couple of weeks.

love to all hope you we all have a good week xx

Rae45
Member

Re: September 2021 Chemotherapy starters

@Biggles01 thank you I will have a look at that. Xx

Biggles01
Member

Re: September 2021 Chemotherapy starters

@Rae45 

TBNC can be a very scary diagnosis. I highly recommend the FB forum: Triple Negative Breast Cancer UK and Ireland (TNBC) support.

They have helped me enormously. Lots of very supportive and extremely informed members in relation to TBNC

I hope it all works out for you. Best wishes and hugs.

Asharia
Member

Re: September 2021 Chemotherapy starters

Thanks @Mrsmillie  that’s helpful, three hours I think I can cope with.  Not much different to the EC timings to be honest, yesterday I was in for four hours but that was with the delay on the meds.

@Somerset Bunny hope you have a good walk with the boys.  Your hair is still looking pretty good - it’s obviously thinner on top but if you didn’t want anyone to know one day you could certainly put on a hat or scarf and look “normal”.  I know for me it’s not family and friends or even colleagues I worry about, it’s the random stares and comments from strangers I want to avoid.

Hi @Rae45 , welcome.  I’m sorry you weren’t offered a cold cap, I know they need to prioritise the backlog so may not have time but it seems so very unfair that some aren’t allowed and some are.  It may be a mixed blessing and is certainly  not always successful but I do think everyone should have the choice.

Right, had lunch and steroids, which will light me up like a traffic light with the hot flush so time to go out and get some fresh air.  Have a good rest of the weekend all,

Ash xx

Rae45
Member

Re: September 2021 Chemotherapy starters

Hi Everyone,

This is the first time I posted so not sure how to post a new post, can only reply so I hope you don't mind @Mrsmillie , I am sure I will get the hang of it!

I am a bit late to the party, but I have been reading all your posts and it has helped a lot to hear from others going through this journey. I have stage 3 triple negative breast cancer and started treatment at the end of September. I guess it has taken me a while to get my head round it all, it was such a shock. I am on Paclitaxel and Carboplatin, I have Carboplatin once every three weeks and Paclitaxel every week for 12 weeks, then I move onto 3 weekly EC so similar to you @Mrsmillie . It has been up and down, last week I couldn't have the treatment because my bloods were too low so that knocked me a bit, but started cycle 3 yesterday with a reduced dose. I wasn't offered a cold cap (something to do with covid) and I couldn't cope with hair shedding everywhere so I got it shaved off. I am now a patchy Sinead O'Connor! The only downside is I get a cold head so have to constantly wear something on my head. At least it is winter hat season!

I hope you all have a good weekend. xx

Mrsmillie
Member

Re: September 2021 Chemotherapy starters

Good morning all,

@Asharia I am on a 12 weekly paclitaxel at the moment, I have had no problems with cold cap, forget it’s on after first 10 mins….of course it does add time on, I’m usually 3 hours total. I will then be on 4 x EC so other way round to yourself. Glad you’re feeling better today, enjoy your walk if you manage to get out.

@Somerset Bunny Have a nice walk with your boys.

hugs to all xx

 

Somerset Bunny
Member

Re: September 2021 Chemotherapy starters

Morning ladies

@Asharia the photo below shows how much hair I have left, my husband now says I look like Max Wall! I was not given the option of using the cold cap and still have hair everywhere else on my body. Head hair is still shedding but very slowly.

Third round Wednesday so hyped for that….not. Hope everyone manages a bit of normality this weekend, I am just off out with my boys for a bit of a walk whilst it’s quiet around here (Glastonbury)

Sue xx

F3EBD5E5-BF08-455F-B28E-1FB6C149D0D1.jpeg

Asharia
Member

Re: September 2021 Chemotherapy starters

Aah, thanks @Mrsmillie .  Can I ask, are you having weekly Paclitaxel first /alone or at as part of the EC - PAC schedule?  I’m on the latter so just wondering which you found more tolerable? How bad is the cold cap for Pac, I’m slightly worried about how I’ll cope with it being every week, how long are you in for overall each time?

Hope you’re having a good weekend all, I was completely wiped out yesterday but much better today (the normal day 2/3 hungover feeling 😏) so hoping to get out for a walk later.

Ash

Mrsmillie
Member

Re: September 2021 Chemotherapy starters

Feel free to skip @Asharia  I’m sure everyone skips around even if they don’t always post.

I’ve just had number 8 of paclitaxel and have been using cold cap, still holding on to hair, but shedding, had really thick hair to begin with, don’t know whether that makes any difference long term though.

Have a good weekend all xx

 

Asharia
Member

Re: September 2021 Chemotherapy starters

Thanks @louby_lou69 , good to know that’s fairly normal then.  Odd how it all sheds at different times.  I’m back home and sipping a hot drink in front of the fire trying to warm up- I managed the cold cap again, it wasn’t painful at all but today the chill does seem to have got into my bones. Everything went ok, but the drugs were held up a bit in pharmacy so I had to sit there with it on for an extra half hour or so so that may have contributed.

ive only just realised I’ve also skipped threads from October to September, hope nobody minds!

louby_lou69
Member

Re: September 2021 Chemotherapy starters

@Asharia 
I'm on day 11 of my second EC cycle and my buzz cut is still shedding. I've still got pubic hair and leg hair, really thought they would have gone by now. 

Asharia
Member

Re: September 2021 Chemotherapy starters

Morning all,

Im back in for my second cycle today, taken the anti nausea starter and just waiting for the main course!  Was such a glorious morning today here, crisp and frosty with mist rising over the river and a clear blue sky.  So I managed to sneak in an early run before coming in, it was so nice to feel good before a few days of crap. Hoping this cycle goes as smoothly as the last one, although I’ve been warned that the fatigue at least tends to build.  

Still got most of my hair, it’s shedding a bit but nothing noticeable to others yet. I haven’t lost much body hair either though, how is everyone else doing with that? The nurse today said that the next three weeks is key- apparently what I still have after the second cycle I’ll probably keep.  Not sure if she was being overly optimistic there but I’ll keep my fingers crossed.  

wishing everyone a good weekend and a smooth cycle to anyone else in today.

 

Ash xx

Magenta59
Member

Re: September 2021 Chemotherapy starters

Hi @Somerset Bunny , yes about through bog trotting! Getting back to normal a week exactly from the Abraxane. Docetaxel I had 1st cycle and then reacted to 2nd time was not nice, I have to say. I had a very confused digestive tract-it couldn't make up it's mind whether to be costipated or go the "other" way. Hard to strike a balance with meds, and the cramping pains were sickening! The sore mouth was dreadful and combined with dental pain made chewing impossible by the end of the first week. It also made my skin prickle and itch. Joint pain as you expect, plus shooting pains in my surgery boob and arm, and also random stabbing pains in odd places. It was like someone sticking you with a hat-pin. And I told my lot to chuck out the voodoo doll. LOL! A barrel of laughs it was not! This Abraxane has not been as bad as I expected although the constant trips to the loo have been a pest, especially at night! Mouth has been fine apart from the nasty taste. Bit of nausea but meds worked. Hoefully it won't get worse with subsequet cycles. I hope the Docetaxel isn't as bad for you-at least it tends not to make you sick which is nice.

Take care my lovely and good luck with it. Jane.x

Somerset Bunny
Member

Re: September 2021 Chemotherapy starters

Morning ladies,

I trust I find you all as well as can be expected on this journey we are all enduring. @Magenta59 hope you are feeling more yourself after your bog-trotting ...that brilliant expression really summed up your situation aptly! 

@CT2021 I have to say good on you ditching the cold cap, it should make you chemo sessions shorter (a small blessing) I was not allowed it but tbh now 80% of my hair is gone I've accepted it ... friends have now likened me to Max Wall and the family call me the Merry Monk as for some reason I still have side bits and a fringe remaining!😂 I have a daily routine of sorts and find it helps, but then I have always had keep days similar as my youngest (17) is autistic and this helps him remain calm and stable (proud of him as he has dealt with this major change in our lives very well, I can't be that bad a parent after all!)

@veestar re the filgastrim side effects I get really achy bones especially around my shoulders, my teeth hurt bizarrely and it zaps my energy for a couple of days, hate it!

@louby_lou69 sending hugs to you my lovely, I know exactly how you feel, I'm on FEC every three weeks (my last one of these is next Wednesday, I'll be half way through then like most of you, I start the dreaded, I've been told this is tougher, Docetaxel for 3 more rounds) results in a sore mouth, indigestion, hot flushes ...pants!!!

@amy46 yep I am with you everyone is gifting me herbal teas, sugar free sweets and anything containing ginger all of which I am not a fan 😂 Although someone I haven't seen for a few years but is a facebook friend kindly sent me two chemo beanies yesterday which I thought was lovely.

@aliess hugs to you to my lovely, hope you get some positive results today and manage to get out and about, wish I lived nearer the sea. I will give you a shout if I am in your neck of the woods in future hopefully I'll be there next May for a Pet Shop Boys gig 😃 I managed a ride out on my bike yesterday, a 5 mile round trip to the nearby Clarks village, first thing in the morning so very few were about, I am not allowed near a supermarket but can go shopping in smaller retail establishments with caution mask and gloves, Seasalt had gone...I was gutted... as I loved your snoods Ali but I did manage to get a couple of plainer ones in Mountain Warehouse (they have at present become my headwear of choice) I did feel better for it. I hope to get out for a longer cycle at the weekend with my eldest son (23), we used to do 15 to 20 miles rides before this 💩 show.

Right I'm off to see what delights my middle fiddle has purchased for us all as I sent her to Tescos this morning....you give them a list but they always shop off list and you never know what you will find in the bag to wipe down (covid still high here)😂! Hope everyone has a good a day as they can.

Much love Sue xxx

Magenta59
Member

Re: September 2021 Chemotherapy starters

Hi @veestar @amy46 @CT2021 and all you super ladies out there. Hope you are having a good day today-ut isn't easy! Feeling more human. @amy46 I managed a hot chocolate today! @veestar I get ESA as self employed but I think if you are unable to work and can't get sick pay you could apply for this-do it online at gov.uk. DWP will pay you £74.70 for 13 wks then with your medical proof (ESA50 form you get BCN to endorse and post back) they will upgrade you to the support group on £114.70 a week. This can continue to be paid if you just go back to work part-time, which I'm positive I will be doing as I won't cope with the previous workload, up to 16 hrs or £143 per week, no time limit. Might be worth looking into-Macmillans have a lot of info. I had previously spoken to them when I had anxiety issues and they wer great. Ask for the Welfare Rights team-they will check out anything you may be entitled to, AND deal with your grant application directly. One call and minewas sorted and money in my bank within a week. They just need info about your money coming in/out utilities, mortgage etc. They will even direct you to where you can get help with your bills. They are marvellous! Or there is Universal Credit? Don't know much about that though.Hope this helps you hun.

Have a good day folks, weather here is atrocious, so trip out for compost has been postponed!

Jane.x

aliess
Member

Re: September 2021 Chemotherapy starters

Hi ladies

it seems we’re all struggling past the half way mark, thought I was doing so well then bang! 
I started having temperature fluctuations 2 weeks ago which i reported to 3 nurses and 1 doctor. I have been taking paracetamol to control it. But the weekend it got so much worse and I ended up being taken in for tests and assessments. Was quite poorly. They think I have an infection somewhere. Or it could be a side effect in which cases they will have to adjust dosage. I’ve got it in my head that there’s more to it as they did a chest X-ray right at the end but no one told me if it was ok. You know how your thoughts go deeper into that tunnel. Also started with the tingling fingers. 😔 just feel so deflated. Hopefully I will hear some results today. 
I’m going to try and get out for some fresh air today that may help

💕

Jill1998
Community Champion

Re: September 2021 Chemotherapy starters

@veestar 
Macmillan have welfare rights / financial advice helpline - may help you work out what support you can get money wise .

Kitkat23
Community Champion

Re: September 2021 Chemotherapy starters

Hi Veestar

Re benefits, Just jumping on your thread.....I got sick pay right through treatment from work so can’t advise re these benefits but I had chemo last year and was given an NHS wig voucher for £150  before starting chemo....this isn’t means tested and is offered to everyone at my cancer Hospital ..... maybe your hospital do the same? It could be used at several local wig places.
Not sure if you’ll be having radiotherapy but if you are , ask about transport......I was offered daily transport ( 16 sessions) .....it’s a 30 mile round trip so this made a big difference....again it wasn’t means tested but offered to everyone having chemo...usually it was a private taxi but sometimes a volunteer driver.

Lastly I was advised by Macmillan to apply for PIP due to chemo side effects and although I waited 7 months for an assessment as I was still getting Chemo side effects and now AI side effects....I qualified for PIP.  

The last thing you need is to worry about finances....I hope you manage to get your grant form sorted out And wish you well with the rest of your treatment 🍀

veestar
Member

Re: September 2021 Chemotherapy starters

Morning lovely ladies.

Great to hear all your news, these posts make my day seeing that we are all in the same boat on rough seas??😂

Banging headache after my double dose chemo yesterday, argh. 

Wig on today for supermarket, not looking forward to wearing it I feel like a different person in it, which is not helpful, but funny I guess. I feel I need to wear it rather than my beanies all the time as when I take the beanie off I have a very bad hair day.🤣

Anyone get any benefits, I m struggling to get the macmillan grant ( the £350 one), I keep asking the chemo nurses they pass the buck to the onclology consultant who said his secretary would fill in the form on line. but so far nothing. Tips ladies please. It will pay for my wigs?🤔

 

Enjoy the bright sunny day all

Verityxx

amy46
Member

Re: September 2021 Chemotherapy starters

@louby_lou69  Sorry you are having a torrid time. I wish I could say something to help but the only thing I can think of is that nothing stays the same forever and you will definitely feel better again. Is it the chemo giving you sweats or the menopause? Probably hard to tell! It’s all a bit bloody shit isn’t it? Sending love x

amy46
Member

Re: September 2021 Chemotherapy starters

@Magenta59  Just reading your post and smiling to myself about the tea! Has anyone else found themselves inundated with herbal teas?! People seem to keep buying them for me, along with lip balms and hand cream (oh and a lot of sweets and chocolates which my kids are pleased about!) I have been drinking a spiced blackberry cordial warm too. Very nice. And I noticed they do a non alcoholic mulled wine now so that might be something to try. Xx

amy46
Member

Re: September 2021 Chemotherapy starters

@CT2021  I have a bit of a routine in school time but only really in terms of getting up and getting the kids to school and at the end of the day when they come home - supper, homework, family tv etc. 
I have been trying to keep active though and walk everyday, still running once or twice a week though I am slow and don’t go far. I think it helps. I’ve got my penultimate Paclitaxol this Thursday then I swap to EC. Not really looking forward to it to be honest. I definitely haven’t felt quite so chipper on the Carboplatin weeks and i wonder if that will be the sane with the EC.

How long do you ladies take the steroids for with EC? I hate them as I can’t sleep so I haven’t taken many with the PC regime. 
@CT2021  how old are your kids? Mine at 11 and 13. 
I’m struggling with my head going to dark places when I wake up at night. Im hoping as the weeks tick away abd I got closer to the end this will improve. Im trying hard to be in the moment and to be grateful for all that I have, amazing family and friends, supportive workplace, relatively few side effects etc but I do find it hard as whenever im not occupied , even if it’s just popping to the loo I find horrible thoughts slipping into my head. 
I am grateful for this forum as I know people here really understand this. 
Wishing you all some happy thoughts and some sunshine today xx

CT2021
Member

Re: September 2021 Chemotherapy starters

@Magenta59 forgot to add glad you are feeling better today!

My kids can’t get over how dark it is now ... it’s hard explaining the clock change thing 🤣

CT2021
Member

Re: September 2021 Chemotherapy starters

Bless you @louby_lou69 I had my first EC and felt ok but the second one was definitely worse. However by day ten I felt much better abd just wanted to eat everything in sight. I had my third (and thankfully last ) EC yesterday and dozed this morning. I’ve pottered about doing a few jobs this afternoon but feel ok. Tend to find it’s worse towards the end of the week for a few days and hoping by day ten I’ll be ok ish.

am thinking I need to get in a proper routine (of sorts). I’m not a great routine person but really feel fed up and know got 3 more months of this 💩 I feel like I need to do regular walks day at the same time each day. 
Do any of you find a routine helps? Like do you get up and shower each day as if going to work? My husband takes the kids to school so I don’t need to get dressed but think may help?

Thanks for any tips and advice you lovely ladies xxx

Magenta59
Member

Re: September 2021 Chemotherapy starters

Hi @louby_lou69 @Lu_B @Mrsmillie @CT2021 and everyone else here today,

I am feeling a bit better today, and have actually managed to eat fairly normally since yesterday. Not sure if my tum is better yet, I thought things had improved yesterday, then after tea running to the loo again so I won't count my chickens! @louby_lou69 @Mrsmillie I hope you are both feeling better today. It's quite debilitating on the whole. I have been outside for the first time in 4days and turned over the earth in the raised beds ready for the winter mulching, so getting my strength back now.

@Lu_Bthanks for the info on Letrozole-it does seem to affect us all somewhat differently, and also the Brand can make a difference. Someone said to tell Onc if it doesn't suit and we can change brands until we find one that works better for us. Problem then is getting the Pharmacy to give us the right stuff every time I guess. I have got lenom and ginger and peppermint teas, but I have had such a vile taste in my mouth they were both horrid! Threw a cup away in disgust and started drinking hot ribena instead. Now that IS quite acceptable as it tastes okay. It's a weird thing but there it is. Drinking lots of Lucozade and Dry Ginger Ale. Feeling no nausea today which is great, so I think a corner has been turned! Some things have been worse with the new drug and some better, as in this time, despite the horrid taste in my mouth, it hhas not been sore and no dental pain at all. This is a relief as last time it was dreadful.

@CT2021you made the decision to ditch the cold cap and I can't say I blame you. It sounded an ordeal with no definite benefit, and as you say it lengthens your chemo session considerably. I just want to get it done and get home!

Hope everyone is having a good weekend, and the weather is being kind. Nice day here, sunny but a little chilly. Jane.x

louby_lou69
Member

Re: September 2021 Chemotherapy starters

Hi everyone, hope you're all managing to cope with your side effects.

Im on day 8 of my second EC and am just about coming out of that chemo fog.

Number 2 has been much harsher than the first one, I've suffered with terrible throat pain, indigestion and sweats that leave me either stripping off or huddling under a blanket. I take my turban on and off a hundred times a day it seems.

Ive struggled to get any decent sleep and find myself falling asleep all over the place at random times of the day. I have one EC left and I'm truly dreading it knowing how it will make me feel. I just wonder what side effects #3 will throw at me. At least I have 2 weeks now to recover and get my strength back .

Off for a walk in this beautiful sunshine

 

Lu_B
Member

Re: September 2021 Chemotherapy starters

Hi, Jane @Magenta59 , 

I am sorry to hear about your side effects.... keep going. Some of the worse days after chemo I just watched TV and waited for the hours to pass because I knew the further away from the infusion, I would feel better.

So dar, letrozole seems ok. I asked my sister in law about it and decided to take it in the evening to avoid fatigue during the day. 

It is frustrating feeling lack of energy but I am trying to accept it and let other people help me...

I drank a lot of Pukka herbal teas during chemo because the water meds me sick. I can recommend their green teas, lemongrass and ginger, three ginger and apple and cinnamon. I don’t get any profits btw! LOL. I even kept a mug with sachet and kept topping up with hot water from a flask.

And again, in the evening, ice lollies...

I hope the week improves...xxxx

Mrsmillie
Member

Re: September 2021 Chemotherapy starters

Good morning ladies,

@Magenta59 Do hope you are starting to feel better after your rough few days, the weather definitely isn’t enticing anyone to venture outside……or is that just me using it as an excuse🤔 .

I had a really rough day yesterday, thought I’d got away with it as it usually hits on Sunday, but no, it was waiting for me……on the plus side slept well and hopefully things will ease today ready to start over tomorrow, the week goes so quickly.

@CT2021 You will feel better now you have made the decision to stop the cold cap, one less thing to worry about and great that you’ve finished with the EC treatment, hope you soon feel better.

Lots of love to all moving forward xx