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September 2018 Chemo Starters.

Member

Re: September 2018 Chemo Starters.

Hi Everyone

I am now on weekly paclitaxel and am suffering terrible with hot flushes.

I can't sleep at night it is so bad.

Anybody else suffering like me on the same chemo.

I am also putting on so much weight as well which I didn't expect.

I am now a bald sweaty umpa lumpa. 🤣🤣🤣🤣

Kath xx
Member

Re: September 2018 Chemo Starters.

Hi Mama Tony,

No I'm not on any special diet, well I am on a low potassium diet but that's because my kidneys are knackered, nothing to do with the cancer as had it years before. Think chemo may have sped up the deterioration of my kidneys though ☹️.

Some people say dairy is bad? I don't drink milk now, I drink oat milk but more because it's low potassium.

Life is for living and I figure it would be pretty miserable existence going without chocolate & wine 😬

I put on 2 and a half stone during treatment, my main aim was to lose it and eat a healthy diet.  I lost all the weight plus a little more, joined a gym and reckon I'm fitter now than I was 20 yrs ago.

Because of the trip neg diagnosis I did opt for brca testing - which thank goodness was negative.

I can only go by my experience - I had 6 monthly check ups (cop a feel) alternating with consultant and oncologist but only 1 mammogram a year - that was for 5 years.
This year I had the choice to be discharged or see the consultant once a year - I wanted the reassurance. I'm not sure how long the annual mammo's go on for....

Take care Nikki x

Highlighted
Member

Re: September 2018 Chemo Starters.

Thanks MamaTony ... it’s good to know that they should be the same ... can prepare a bit ... or try at least 😂

Ahh GabyF sorry to hear you’ve had another rubbish night.
I’m not looking forward to the hot flushes at all ... can you take something to ease them?

We definitely need some lighter moments to keep us going ... this nightmare seems never ending at times and just when I think I’m coping ok I start blubbing again. We are getting there tho ... Christmas seemed a long way off when I first started treatment 💪🏻❤️

Here’s to Spring, Sunshine and kicking the crap out of cancer 💩 ☀️ Lisa xx
Member

Re: September 2018 Chemo Starters.

Hi,

Lisa: I do find the side effects for me have been the same. Bad furry mouth for the first 7 days, have got anti biotics to sort that out. Loose my taste buds for the first couple of weeks and also suffer from dry mouth, have bought biotene mouth spray which helps that. Few aches and pains but manageable and tiredness....better than FEC tho!

Gaby: I have not googled as too scary. I think the main difference is that there are no tablets longer term so get 6 monthly scans I believe. My thinking is to live my life and try and be as healthy as I can whilst still enjoying life!

❤️❤️
Member

Re: September 2018 Chemo Starters.

Hi Everyone,

 

Another rubbish night with hot flushes and nightmares. However, I dragged myself in to town, got some nice presents for my husband, then got back home, had some soup and crashed in to bed for an hour and a half. Absolutely shattered! Just got up and had another bite to eat and am feeling so much better. I did try to reduce my daytime sleeps last week, as I thought they may be affecting my ability to sleep at night, but that theory seems to be out of the window, so, like you Galligirl, I've decided that I might as well get some sleep when I can!

 

MamaTony: I'm also triple negative. So far I have very deliberately not read up anything anywhere on this, as I am terrified what I might find. However, I am very slowly (maybe, possibly Smiley Wink) coming to the conclusion that I can't shut out all knowledge forever and perhaps, just maybe, finding out a bit more might be a good thing. Did you google this at all? I've been told by various people here on the forum that that is a very BAD idea. Or did you just get some books from the library? I'm really not sure how to go about finding out more without scaring myself too much! Smiley FrustratedI might ask at Maggies when I go there on Thursday and will let you know if they have any good tips.

 

LisaT: So glad you had a nice weekend and birthday. It's so important to find those happier, lighter moments.Smiley Happy

 

And finally, Galligirl, I think we all want Spring to arrive, with lots of hope, sunshine and flowers. It's not about wishing time away, just looking forward to a brighter future (I'd better stop here, otherwise I'll start blubbing! Seriously, I thought I'd done with tears, but they are often not that far from the surface!). So here's to Spring and Sunshine!!! HeartHeartHeart

 

Gx

 

 

 

Member

Re: September 2018 Chemo Starters.

Morning,

Hope you are feeling brighter today GabyF / ALittlePixie ❤️ Hope you will get a solution from your oncologist today ALittlePixie - sounds like you’ve had a rubbish weekend 😘 Not heard about steroid tail but I had 3 days of steroids plus an extra day of steroids on half dosage ... not sure if similar thing.

Thanks for the tip about the fizzy vitamin C tablets Jacqs / MamaTony - will definitely give that a try. Did you find that you follow the same pattern of SE with Ts MamaTony?

Had a lovely weekend away thanks Galligirl ... really lucky with the weather ... it was just what I needed as had a bit of a wobble on my birthday. Good luck with your first T on Thursday 💪🏻❤️

Hope everyone has a good week 😘 Lisa xx

Member

Re: September 2018 Chemo Starters.

Good Morning!

Nikki49 - thanks for taking the time to pop in....so good to reinforce that there is light at the end of the tunnel ☀️

Alittlepixie - I hope you are a little more on top of your pain and that your visit to the oncologist nurse finds some resolution for you....!

 

GabyF - I am also having problems sleeping- too hot, twitchy legs, head spinning, can’t remember the last time I actually slept well! I am lucky I can sleep during the day...probably the wrong thing to do but I have to as I am soooo tired 💤. 

 

Does anyone know what the hot flush thing is all about? I get the whole reduction in er but why do you get hot? Must google it! 

 

MamaTony - I have my first T on Thursday....feeling anxious so following your tips avidly! Bit C tablets at the ready! 

 

LisaT - hope you had a lovely weekend away celebrating your birthday 🎂 

 

and to everyone....hang in there...it is a long slog...I don’t want to wish time away but I dream of spring sunshine and daffodils. GGx

Member

Re: September 2018 Chemo Starters.

Hi,

Nikki: so great you have got through this journey🎉🎉
I am also triple negative and it scares me so much. Have you made many changes to your lifestyle post treatment?
Reading books on diet etc. but all a bit brutal... no chocolate, carbs, wine🙁🙁... all the good stuff!!!

Tip for those going through T chemo, I find if you get some vitamin C tablets and put 1/2 of one on you tongue it freshens your mouth a bit and gives you some saliva.
I am suffering from dry mouth and sore finger nails after 2 T’s.

Hope everyone has a good week❤️❤️
Member

Re: September 2018 Chemo Starters.

Those hot sweats are hideous.  They started just at night, but am now having them daytime too.  Thought the whole menopause thing was over for me as I had a hysterectomy 9 years ago, but thanks to chemo, it’s all back with a vengeance.  It just keeps on giving doesn’t it 😡😡

Member

Re: September 2018 Chemo Starters.

Evening everyone,

 

It really is fantastic to hear from someone who has been through all this rubbish and come out the other side. Thank you, Nikki.

 

Little Pixie, I hope you were able to sort something out to deal with your pain and are feeling a bit better.

 

Went for a nice walk in our local park with husband today - good to get some fresh air, although I'm feeling breathless again.Smiley FrustratedAlso managed to do some Christmas shopping locally, which was very unusual for us - we're usually in a slight panic by mid-December! I'm planning to go in to town tomorrow get a few more pressies, something useful to do with my time anyway.

 

LisaT & Jacqs: I am trying not to snack too much, as I realised I was putting on a lot of weight. I have tried to get temporary relief from the bad taste by drinking lots of different herbal teas, which kind of helps, though by dinner tonight I was so desperate for food that my husband had to remind me to slow down! Smiley LOLSo maybe that doesn't quite work either?!

 

Rubbish night last night: I felt really hot one minute, then threw the duet off, only to get absolutely freezing within seconds, so kept waking up and eventually gave up around 5am - awake until c.7am, then fell back asleep, only to be woken at 8am by our neighbour's son playing some wild game that involved screaming the house down (he's only 3!). Hopefully I'll sleep a bit better tonight, as long as my body doesn't do that hot-cold thing again!

 

Love to you all,

Gx

 

Member

Re: September 2018 Chemo Starters.

Morning everyone
Thanks for the advice Nikki...it's great to hear you're through and there's a light at the end of this hellhole. I've not heard about doing the Steroid tail, so I'll ask.
Thanks to everyone RE advising about my pain on this T. I'm seeing my oncologist nurse tmoz so I'll tell her about the pain. It's now gone to my hips and lower back.....I swear it's like child birth splitting pelvis pain. I have issues with my bowels, so the only painkiller I can tolerate is paracetamol. Everything else reacts badly with my bowel and causes more pain issues. I'll see what they say tomorrow. I'm using heat pads at the mo and meditation to get through.
On a good note, there's blue skies and it's Sunday, so I'm gonna spend time with my little family 😍
Love to everyone xxx
Member

Re: September 2018 Chemo Starters.

Good morning ladies,

 

I'm from the September 2013 thread, I'm not on here much these days but I do like to pop in particularly on the September group to see how you are all doing.

 

When you get that rotten mouth - Some of the girls in my group drank tonic water prior to eating they swore it made food taste near to normal, unfortunately for me I don't like it.

 

I had awful pain on the  'T' part of FEC-T, I complained to my Onc to try to score some stronger painkillers for next time - I didn't want a reduction in chemo strength because hey that's why we're doing this...... to blast this disease to kingdom come.  Anyway he prescribed what he called the steroid tail, yes it is more steroids but you take them in ever decreasing doses daily rather than just the sudden stop.  It was like a miracle cure.

 

PS Top tip! I was told to take my steroids at 8am & noon, they never interfered with my sleep 😊

 

As for me now, I had skin sparing mx, then reconstruction surgery once chemo finished, then had a reduction on good boob to match, had a nipple made and then tattoo'd - haha I now got the boobs of a 20 yr old, every cloud and all that 😃

 

As I was triple negative I'm not on any meds which was a bit scary as I felt left adrift without a life belt, my Onc signed me off this year and my consultant will now only see me annually as opposed to 6 monthly for another 5 yrs (he did say he could discharge me but I like his reassurance).

 

So life does go on, you just appreciate it a bit more.

 

Best of luck ladies x

 

PS my hair grew back curly, was dead straight before lol, it's not so curly now more of a kink.  I used to have quite thick hair but alas it's quite thin now ☹️, on a plus note, leg & armpit hair is really sparse 😆

 

 

Member

Re: September 2018 Chemo Starters.

Hello Lovely Ladies.

Seems like everyone is suffering this week.

 

Gaby - I sympathise over the horrid taste.  I had my double dose of Paclitaxel & Carbo on Thursday and since have had cystitis, sore tummy & rib pain, daily nosebleeds & that awful taste, so have been feeling sorry for myself for last few days.  Don’t stress about the EC just yet - take it one step at a time & it seems more do-able.  Not sure if EC is like FEC but with just 2 of the drugs instead of 3 ?

 

A Little Pixie - so sorry to hear you’re suffering so much my lovely.  I agree with everyone that you need to ask for some stronger painkillers to make it more bearable.  I’ve been getting quite a lot of pain in my ribs but the oncologist just said to see how it goes as it’s not such common SE with drugs i’m on.  If it does keep on, she said she’d organise a scan to see what’s going on as it’s possibly to do with lingering healing from breast surgery. 

 

Lisa T - i’m with you.  The taste doesn’t seem quite so bad when you’re actually eating, so i’m guilty of picking constantly at the moment,  have put on 1/2 stone in last couple weeks🐷🐷

 

Has anyone tried the fizzy vitamin c tablet dissolved on the tongue? Just 1/2 tablet each night.  One of the ladies on an earlier thread suggested it for oral thrush but it does help a little in clearing that awful taste & as it’s only vitamin c, doesn’t cause any problems.

 

Looking forward to spending the day with OH tomorrow.  Haven’t seen much of him the last week or so as he was working away last weekend & has been busy all of this week.  

Enjoy what’s left of the weekend xx

 

 

 

 

 

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Re: September 2018 Chemo Starters.

Little Pixie: I hope you managed to get a bit of fresh air and that your SEs are starting to ease. There must be something you can take to lessen the pain a bit?! I agree with LisaT, contact your Chemo nurse and badger them for help - I don't see why you should have to put up with so much discomfort and pain! I had a sleep after lunch and am feeling a little less spaced-out. This morning I had a really bad bout of chemo brain, not being able to remember words, what I had said/did etc. My kids just laughed and groaned Smiley Tongue

 

LisaT: Thanks for your encouragement. I'll be on EC, with out the F (whatever that stands for!), but hopefully it will be okish. I just want all of this to be over Smiley Frustrated

 

Ktk: Gosh you're brave. I don't think I'd have the confidence to do all that at school functions, well done you! Mind you, I think I definitively saw a couple of mums at the parents' evening who seemed to have rather thin hair and were wearing scarves. Sadly there was no time to introduce myself (they were new to the school I think) and anyway, what would I have said "Excuse me, I notice you've lost your hair. etc etc" Not a great conversation starter! Smiley LOL

 

Am planning to visit the Maggies Centre at St Barts on Thursday, if I feel up to it. They've got a drop-in walking session, hair care (for what's left!) and general advice day then, so I'll give it a go. I feel I could do with a little more socialising and my local Macmillan Centre doesn't really offer that.

 

Hope everyone has a reasonable Sunday. Might go out for a walk with my husband, if the weather improves (very grey and dank here in London).

 

Gx

ktk
Member

Re: September 2018 Chemo Starters.

Hi Gaby, I was head of Y11 last summer, and couldn’t go to school once chemo started because of the risk of infection! I wore a big hat for the arrival at the prom, but took it off for the meal. As I decided not to have a wig, I think they noticed!!🤣🤣🤣xx. The next time I went in was on results day, again bare headed. This was the first time most of the parents had seen me. It was fine! I’ve been off school since May, but I guess I’ll have to go back sometime in the new year!! Kx
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Re: September 2018 Chemo Starters.

Afternoon ladies,

Horrid taste is awful isn’t it ... read on another post that having ice lollies before and and during treatment is supposed to help ... not tried it tho. I keep eating to get rid of the taste 🐷🙈 probably not the best solution ha ha!

Sorry to hear you are both feeling rubbish today 😘💪🏻 ALittlePixie are you taking anything for the pain ... ask your nurse for stronger pain relief if you need it (my nurse mentioned codeine) I had rib and back pain too but it wasn’t too severe and paracetamol took the edge off it.

GabyF - I was ok on FEC too and had a good couple of weeks. The unknown SE are always scary but try not to stress ... hopefully you’ll breeze through it 😎

Sending big hugs ... we’ve got this 🥊💪🏻❤️ Lisa xx
Member

Re: September 2018 Chemo Starters.

Afternoon Gaby
Sorry to hear you feel so crappy after Wednesday's dose. The horrid taste in your mouth is the pits isn't it.
I started with the T side effects on Weds afternoon and they're kicking my ass at the mo, so I'm stuck in bed, in pain and feeling sorry for myself! I'm hoping the next lot of T won't be as bad. My chemo nurse said this one would be bad cos I've still got FEC in my system.
Try not to stress too much about EC. You're right that it affects different people in different ways. Most people seem to get a good couple of weeks with it tho, so I really hope you do too.
It's quite a bright day here today so I might try and shuffle outside for 5 mins of fresh air. I feel like I'm 100 and I've been run over multiple times, it's ridiculous!
Anyone on T.....did you get really severe rib and back pain?!
Hope everyone is as well as can be. Lots of love xxx
Member

Re: September 2018 Chemo Starters.

Morning everyone,

 

we all seem to have gone a bit quiet! I am feeling a bit rubbish today, as I had my doubledose of carboplatin and paclitaxel on Wednesday. Didn't sleep well, horrid taste in my mouth and generally just very off-colour, so nothing unusual there Smiley Wink. I've got two more session of Paclitaxel and then I switch to EC, which I am rather apprehensive about. Some people don't seem to have SEs that are too awful and others really have a rough time. However, it's not as if I have any choice in this, so I'll just have to see what happensSmiley Frustrated.

 

Not much to report here otherwise. Just hope everyone is ok?

 

Gx

Member

Re: September 2018 Chemo Starters.

Hi ktk,

 

I think you're incredibly brave letting your kids loose on your hair! Sounds like you actually had loads of fun together though, which is so important at the moment and must have outweighed any worries you had. Nailscissors??? Actually, sounds like the sort of thing I would do - being smaller and perhaps therefore safer?! Smiley LOLAs for time, well that doesn't matter - it's not as though I have loads to do at the moment.Smiley Wink

 

But a Year 11 Prom, well you really are brave!! I haven't told any of the parents at my kids schools about the BC, partly because I don't know them that well and partly because my son is keen to keep school a cancer-free zone, which I can understand. I was slightly apprehensive just going to a parent evening the other day. No one said anything, as everyone was too busy trying to get to their 5 mins slots. Christmas Fair is coming up soon though, so I will need to think what to do, if anyone comments on my appearance. Maybe they won't? Did anyone notice at the Prom?

 

Gxx

ktk
Member

Re: September 2018 Chemo Starters.

It is possible to do your hair yourself, but it takes ages!! I attached my shoulder length hair with (nail!!!) scissors, then started with OH’ s shaver. I hadn’t realised that it wasn’t very good/sharp. My husband, son and daughter all had a go. We had loads of laughs and no tears!! We managed it in the end and I was happy with the result! I actually went to the year 11 Prom the next day! Good luck, but perhaps seek professional help first!!! Kxx
Member

Re: September 2018 Chemo Starters.

Thanks so much, Jacqs and Little Pixie. I'll mull things over for a few days and try to find someone with a clipper (hubby doesn't have one!). I've already got a Pixie cut - got that a few weeks ago, but my hair has rather surprisingly grown a bit since then while at the same time falling out, so I do look rather odd now with a few longer bits and quite a lot of thin patches, lovely! Smiley Wink

 

Little Pixie: what an exciting career you have ahead of you, plus a a lovely creative hobby (actually sounds like your rather good / advanced at the jewellery making, if you're selling it, brilliant!). But yes, I can imagine upholstery is physically tough. Still, you've got something wonderful to return to next summer!

 

Jacqs: How nice you can drop that last chemo session! I'll be interested to hear how you get on with the genetic counselling sessions. I'm due to get my results on the genetic test early next week and may be going down the same route. I had my double dose today - I usually feel fine on the day and even the next day; the carboplatin hits me on Fridays and particular Saturdays. i.e. just in time for the weekend.Smiley Sad I hope everything goes smoothly for you tomorrow.

 

Gx

Member

Re: September 2018 Chemo Starters.

Morning!
Braving the shave - I went thru a very similar process to Jacqs. The hairdresser cut it in a very shirt pixie cut, then when lots more came out, my husband used his clippers and kept going gradually down in size. The next few days, I soaped my hair in the shower and the lasagna bits came out.
I actually like my bald head, although I do have some fluff slowly emerging now. My daughter, she's 10, was really worried about me being bald but she quickly got used to it and likes it too.
Great news about bloods and chemo again Gaby.
Fab news about chemo stopping at Christmas Jacqs. I'm so pleased you had a lovely time at the Christmas market.
Thanks Lisa, so far so good with the T. I do have a horrid taste in my mouth and my chest is tight, but no nausea which I'm happy about.
Love to everyone. It's peeing down here....it's called The Lakes for a reason I guess 😂😂😂
Member

Re: September 2018 Chemo Starters.

Good morning all.

 

Gaby - I did the shave thing in 2 stages.  I went to my hairdresser at first and asked for a really short pixie cut. I had that for almost 2 weeks then my hair started to really thin out so I got my hubby to do a number 2 all over with his clippers.  That lasted only about a week, then I started to get bald patches, so I basically rubbed my head over the sink & the rest of it pretty much came out.  

I had my stepdaughter & my best friend there, but had a no tears rule because I was trying to be positive about it & to be honest I handled it a lot better that I thought I would.  I had long curls which I loved, but being bald is not the worst part of the situation we find ourselves in!

If using clippers you do have different settings, so you can choose the longest one to start with or go to the hairdresser & try the pixie cut.  Pinterest is great to check out cropped cuts.

You can do this - be strong, be positive 💪💕

 

Well all went well yesterday.  My oncologist has agreed that I can complete my chemo before Christmas.  I was due to have my last session just before New Year, but she’s happy to knock the last one on the head.  Then had my counselling session for the genetic testing, followed by a walk round the Christmas markets which was lovely but really cold & damp.  Today i’m feeling exhausted so it’s going to be a quiet one as it’s chemo again tomorrow.  Double dose of Paclitaxel & Carboplatin.  What joys!

 

hope everyone is well xx

 

 

 

Member

Re: September 2018 Chemo Starters.

Good morning all you lovely ladies,

My bloods were OK, so am now hooked up for premeds and chemo. What a relief 😌.

I'm loosing loads of hair now so am wondering whether to brave the shave 😔. I don't actually find the idea of being bald that horrific, but I am worried how to cope with the actual process. Do I go to my hairdresser, who I'm sure will be lovely, but then I will have to deal with the other people in the salon, both staff and customers - that thought really bothers me somehow. Or do I ask someone in my family to help me with this at home, but that might be rather upsetting for them (I'm thinking of my dad, who would do it I'm sure, but the thought of him getting upset makes me feel so sad). How did those of you who have gone for the shave deal with this? Also, can you set the shaver to a setting that leaves the hair very short but doesn't actually chop it all off? I've never shaved any of my hair, so feel completely ignorant 😁.

Hope everyone's week is going reasonably well.

Gx
Member

Re: September 2018 Chemo Starters.

Ha ha thanks GabyF ... had me worried there for a minute 😉 Hope all goes well tomorrow 💪🏻❤️

Hope you continue SE free ALittlePixie ... the tiredness and aching hit me a few days after but I’m hopefully over the worst now 🤞
Member

Re: September 2018 Chemo Starters.

Evening you lovely lot
Well, so far my T hasn't made me nauseous today, just very very fatigued. I can cope with that so far. It's so nice not feeling so grim, especially after the horrid FEC SEs I had for 2 weeks every time. Is this the calm before the storm?!?!
Hi GabyF, no I'm not a professional jewellery maker but I do love it immensely and I do sell at craft fairs etc. I love anything creative with my hands. I'm actually an antique upholstery apprentice, but I haven't been able to go since I got BC in June. It's just too manual and hard so I can't wait to get back to it once all the chemo, radiotherapy is done etc.
Hope everyone is keeping as well as possible xxx
Member

Re: September 2018 Chemo Starters.

LIsa - HAPPY BIRTHDAY for yesterday! I hope you were spoilt rotten by your loved ones! How lovely to be going to the Lake District. Hopefully the weather will be kind and allow you to go for some nice walks and enjoy the stunning scenery. 

 

I'm just "talking" about courses and the OU, Lisa! Not actualy doing them, that would be far to organised! I had a look at the OU website yesterday and there weren't any short courses that I fancied - anyway, I kind of panicked, when I read all the stuff about essays and deadlines! I am really not sure that I want to commit to that sort of thing right now.Smiley LOL I did find a one-day jewellery-making course in London which sounded fun and rather less serious. May book myself on to that in Jan/Feb, once I know how things go on the new regime of EC. Little Pixie:are you a professional jewellery maker or doing it as a hobby? I've always fancied doing something hands-on and creative, so maybe now is the time to give it a go - for one day at least, which is about as much time as I can concentrate for I think!

 

Christmas - well, you all inspired me, so today I ordered some presents online and went shopping for my kids in our local art shop. Both of them love drawing, painting etc. and I was quite sucessful in getting them lots of little interesting bits to keep them busy. Need to get more stuff, especially as I have several December birthdays to sort out as well, but at least I can now fill the next few days with shopping, wrapping, and then, yes, Christmas cards - hurray, I've got something to do! I don't usually get my cards off until the day before Christmas, sometimes even after Christmas, but this year I should manage to get all of them out on time.

 

Bloods and Picc Line care this morning. My Picc Line has got a bit blocked again (fluids go in, but no blood comes out Smiley Frustrated), so they injected something that should clear the line by tomorrow. THis shouldn't cause any problems for the chemo tomorrow, just a bit of a nuisance today.

 

Gx

 

 

Member

Re: September 2018 Chemo Starters.

Ooh I'm jealous of the Christmas market in Manchester Jacqs. Hope the bloods and oncologist goes well hunny.
I'll wave back from my bed Lisa 😉
Member

Re: September 2018 Chemo Starters.

Ahh not far at all ALittlePixie ... will give you a wave on my way past 👋😊

Thanks Jacqs. Good luck with your bloods tomorrow. Love a Christmas Market .. especially the mulled cider 😋 .... hope you have a fab day xx
Member

Re: September 2018 Chemo Starters.

Happy Birthday Lisa.  Enjoy your trip to Newby Bridge.  Sounds like the perfect way to escape for a few days.

 

Can’t agree more about the boredom.  I’ve already bought most of my presents for Christmas and today started to write out Christmas cards.  Don’t know what I’m going to do once we do get into December 🙃.

 

At least tomorrow is a busy day.  Bloods 1st thing in the morning followed by an appointment with my oncologist.  Then in the afternoon, I have my therapy session for genetic testing and as i’ll be in Manchester for the afternoon, we’re going to have a little wander around the Christmas markets before heading home.  

 

Hope everyone has a good week xx

Member

Re: September 2018 Chemo Starters.

You'll have a fab time in Newly Bridge. It's beautiful and you'll only be down the road from me. I'm up on the West Coast of Cumbria!
I have the same problem hiding pressies. We're only in a small cottage and there's not much storage....at the moment pressies are all piled in bags in the corner of my bedroom. I made a list of what I've bought and wrapped cos my chemo brain is terrible!!!! 😂😂😂
Member

Re: September 2018 Chemo Starters.

Thanks everyone 🥂 Going to Newby Bridge with hubby and our 3 girls ... it’s just what I need at the moment.

So far I’m doing ok with my first T. First few days I felt surprisingly fine but for last few days I have been aching everywhere and have a sore throat. Not enough to keep me in bed tho and I’m still eating plenty 😂

I actually feel quite organised this Christmas for the first time ever! Just need to remember where I am hiding everything and what I’ve bought 🤪 My chemo brain is definitely getting worse!

Hope you all have a lovely night ❤️ Xx
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Re: September 2018 Chemo Starters.

Lisa T 

 💐 🎈Happy Birthday 🎂 💐 

It would be lovely if you get the chance to get away to such a beautiful part of the world for a couple of days! 

Fresh air, log fires, gorgeous views, maybe a pub lunch or two? What a treat! Enjoy your day! 

 

 

Member

Re: September 2018 Chemo Starters.

I'm the same about Christmas Aley. My daughter is 10 and we all love the Christmas vibe. I actually wrapped lots of pressies on Saturday....I'm usually a Christmas Eve wrapper 😂
PulaPula,that's brill news about your SEs for the FEC. Hope it lasts for you.
I'm hoping I can get my mojo back and start making jewellery again. I love wire wrapping, but I've just been where I can't really concentrate on anything. Chemo brain is ridiculous at the mo! 😂
Member

Re: September 2018 Chemo Starters.

HAPPY BIRTHDAY LISA!!!!!!
Im so pleased your mammogram was good news and nothing to worry about last week. Yay!
Whereabouts in the Lakes are you hoping to get away to?
Hope everyone else is good. Boredom is crappy isn't it. I had my first T today and the nurse told me to pack a hospital bag just in case. It's made me think I shouldn't be attempting to go out in case I catch anything. More boredom! Saying that tho, my chest is killing me (steroids I think) and I'm absolutely fatigued as hell so currently in bed!
The T itself was OK tho. I'm just waiting for the onslaught of SEs. How is everyone else coping with the T so far?
Sorry to hear about the funeral Jacqs 😘
Glad the meeting with ur surgeon went well MamaTony. Keeping pushing for what you want. I know it's such a lot to think about tho.
Hi to everyone else and hope you're all keeping well. Lots of love xxxxxx
Member

Re: September 2018 Chemo Starters.

Happy Birthday Lisa-T!
Hello ladies!
Man Alive the boredom!!! Now that I’m sort of over the trauma of the initial diagnosis, yes I totally agree bored beyond belief!! I sort of ‘write off’ the first few days but them make myself do things I like even if it’s as silly as going for a cup of tea and a walk around the nearest Waitrose!! Sounds daft! But I’m actually enjoying doing little things that make me happy!! With Christmas around the corner I’m focusing on planning to make it exciting and memorable for my little boy..he’s 4 so this is really the first year he gets it and is actually excited about it..have a great week all 💋
Member

Re: September 2018 Chemo Starters.

Hi all, I have been lurking but not posted for a while as I feel a bit of a fraud as my third FEC has been so painless (after the initial SEs). I have energy, and eyebrows still and everyone keeps telling me how well I look. I’m just hoping the final FEC on thurs is the same, as my second FEC was miserable.

I have my “look good feel better” session tomorrow which I’m really looking forward to.

I’m also planning to start Pilates again in December and maybe some sessions on the exercise bike at home. I’ve also put weight on so my jeans are getting too tight!

I also feel like life is put on hold at the moment as it’s hard to plan. Friends are booking ski holidays etc. Once I know my treatment timeline I hope to have a weekend away with hubby and plan a summer hol with kids. But I expect surgery in jan, then recovery, then more chemo or radio so it could still be a way off.

Anyway, hope you are managing your SEs and I am interested to know how people find “T” as I might need that after my surgery (or possibly before).
Member

Re: September 2018 Chemo Starters.

Hi Galligirl / GabyF,

It is SOOO boring, I agree with you both. I hate that everything is just on hold at the moment and I can’t plan much at all!

So impressed you are both looking at doing courses / gym classes etc .. I need to find a hobby! OU course sounds like a fantastic plan ... I can’t seem to think past the end of the day/week at the moment. Keep meaning to have a long over due sort out but I never quite seem to make a start 🙄

I’d love to go back to the old me without all this worry all the time! It’s my birthday today too - another reminder of how much has changed in the last 5 months. Hoping to get away to the Lake District for a few days on Friday tho 🤞

GabyF - Maggies is definitely worth a trip. I did the Look Good Feel Better session - had a lovely day out and got lots of goodies too. A bit of pampering always helps.

Hope all went ok today with your first T ALittlePixie 💪🏻🥊

Big hugs ❤️ Lisa xx
Member

Re: September 2018 Chemo Starters.

Afternoon GabyF 

A relief to know you are not alone...it helps I think.

i would call myself a sort of ‘get on and do it’ sort of person...like a little project on the go whether around the house, holiday shopping, horses and animals...Now I have these empty days and I don’t seem to have the motivation or energy to do anything constructive. I am not really a big social person, I don’t have hoards visiting or popping in ...that’s not really me but I do look forward to my son coming home in the afternoon! 

I thought about learning something new and, like you felt I couldn’t commit. Maybe the OU would be good, they do short courses don’t they? 

I cant make decisions either...it’s like that little bit of sparkle has gone for the time being....I can’t concentrate, I can’t make decisions and I am frustrated by this person that isn’t really me...I did look at a photo the other day...taken weeks before my diagnosis....tarted up going out to a party (rare night out!) I don’t recognise that person anymore...

music sounds a good idea! Get that 🎹 practice in....is there a certain piece of music you could set yourself as a little challenge? 

The gym is just a good way of getting me out of the house...I just do low key cycling, cross training, walking...a few weights to try and ease the tightness across my chest after mx. Classes are a step too far for me...hehehehe....I would have to book those 🤣.

A new pet is an excellent idea...we got a puppy at the end of last year ( our old lab had been pts a couple of years before) my son drove me mad begging and I gave in and bought a Vizsla - she has been amazing company for me over the last 6 months, always got a smile on her face and a warm welcome home. I also lost my horse just after my diagnosis....very sudden...so having the dog has given me a reason to get up and out on these dark mornings...

 

Here’s to the little positive things that just about keep us sane in this ever changing new world we are in. GGx

 

 

Member

Re: September 2018 Chemo Starters.

Morning Galligirl,

 

SOOO glad to hear I'm not the only one who is bored!! Smiley Very Happy Fairly recently some journalist who's got cancer (can't remember his name) also moaned that having cancer is really boring, and he is defintively right! It's probably partly because we didn't exactly choose this career break and it's not of course particularly cheerful. Also, even when I do plan something, like you, I lose focus. I have a few things that I thought I would get stuck in to, like digging around in my family history (I trained as a historian years ago, so it's kind of interesting to go back to this type of research); and maybe exploring some new skills, like writing or jewellery making, but now that the SEs have become so unpredictable, I haven't wanted to sign up for any courses etc, in case I can't make it on that pearticular day. My husband suggested doing an Open University course and I dismissed that instantly, but actually, thinking about it now, maybe it's worth looking in to? I don't know - I just can't seem to make decisions! Smiley LOL I used to play the piano a lot when I was young, so this morning, after many years of not really touching our piano, I had a 20 minute practice, which oddly enough cheered me up a bit - I wasn't as awful as I thought I would be! I think I'll try to be organised an build a bit of piano practice in to my day (let's see how long I stick with this!). I am also thinking of visiting a Maggies Centre, as I have heard so many positive things about this. Sadly, mine nearest one still involves an hour's worth of travelling, but hopefully it wil be worth it.

 

I'm impressed you've joined a gym - have you managed to go to regular classes? My Pilates teacher comes to our home, as my husband joins in with me and his work hours are so irregular, that we decided this would be the best option. Can't wriggle out of the class that way either, as I have no excuse about not feeling up to walking/travelling to a gym etc.

 

Our darling cat died last summer (the day before I got my cancer diagnosis, so that was a lovely week!) and we have just decided to get a kitten in January. My kids are so excited (my 17-year old daughter burst in to tears when I suggested this!) and I am looking forward to having a bit of company. So there is something positive to look forward to. Cat Very Happy

 

Gx

 

 

Member

Re: September 2018 Chemo Starters.

GabyF - that sums up how I feel...I’m bored too...and not sure what to do about it. I struggle to even read a book, I seem to lack focus. It’s good to know I’m not going mad by myself 😁. 

I have joined a gym to give me something to ‘go’ to...and hopefully help me keep going through the winter...

Enjoy your Pilates 💪 it is soooo good for you and I hope you breathing improves too. GG 

Member

Re: September 2018 Chemo Starters.

Hi Galligirl/everyone,

 

This whole thing is a bit of a rollercoaster of emotions and energy levels, and I am constantly having to remind myself of the endgoal to help me deal with it all. This week I thought I'd have more energy, as it's been drug-free. However, Friday and Saturday I had a bad stomach ache, not sure why, and today the breathlessness has come back with a vengeance.Smiley SadOn the up-side, my taste is fully restored and I have been enjoying my food, which has been such a nice change. My mood has also been up and down, more down than up today. I guess essentially I'm bored - I've got things I can do, but I feel like I'm just filling time. I've had so many years of balancing fulltime employment and kids (and moaning about it! Smiley Wink) and I'm just not used to having to having all this spare time. It's difficult to plan specific activities, as I am never quite sure whether I'm going to be up to it on the day, but I think I need to do more of that nevertheless - I guess I can always change my plans, if I'm feeling a bit rubbish.

 

Another thing that has been troubling me is that I seem to be gaining weight. After my initial diagnosis I lost almost 4 kilos within a week and athough that was obviously due to the shock, I was actually quite pleased with the slimmer me. Then I gradually regained that weight, which was fine, but now my weight seems to be steadily creeping beyond my average.Smiley FrustratedI don't know if that's drug-induced, or if I'm just eating too much! Smiley LOLAt least I've got a Pilates class coming up tomorrow evening, so I can try to work off some of the excess!

 

Hope everyone had a good weekend.

 

Gx

 

Member

Re: September 2018 Chemo Starters.

What a difference a day makes...I feel soooo much better today! Have to keep reminding myself on the really low days that ‘this too shall pass’ and it does...a new day and seemingly a load more energy too! Hopefully will continue and I can start to feel more positive....and active and generally more me...! Happy Days 😎GGxx

Member

Re: September 2018 Chemo Starters.

Thanks GalliGirl ❤️ Hope your pesky naughtyphils pick up today and you manage to get out later 🤗

My nurse was all doom and gloom about the Ts too which was a bit worrying but so far I’m doing ok🤞🤞

Big hugs ❤️ Lisa xx
Member

Re: September 2018 Chemo Starters.

Thanks MamaTony ❤️ I’m really hoping I cope as well as you with the Ts 🤞 I have got the injections but I had them for FEC too so I’m getting used to injecting myself (sort of) ... hubby was a bit too keen to do it for my liking!

Good luck with pushing for your double mastectomy ... I was all set to push for the same yesterday as can’t cope with all the stress! Free tummy tuck sounds very tempting too 🤔 I know some ladies have started their reconstruction already but there was too much info to take in for me! I have opted to leave it for now as I wanted to wait until this rollercoaster has calmed down a bit and then I will think about reconstruction. Also I’ve never had much up top so the mastectomy has not been a huge shock 🤪

Thanks everyone for all your support this week ❤️💪🏻 Big hugs Lisa xx
Member

Re: September 2018 Chemo Starters.

Lisa-T : Fab news! The thought of going back to waiting for results scares me 😟 so pleased the news was good.

 

Mama Tony ; Nice to hear that T is treating you kindly at the moment. Everything I read just fills me with dread....

 

GabyF : Make the most of your extra recovery time....💃

 

Catgarland : Finger crossed for T success....delighted you too have not had any SE yet....long may it last! 

 

I have spent most most of the last day or two asleep! Decided my naughtyphils are at their low point...earlier in cycle than before but same ‘knocked out’ feeling. Hoping to bounce back today and get out....

 

GGx

Member

Re: September 2018 Chemo Starters.

Hi Everyone😊

Lisa-T: I am soo happy for you that your scare on your good boob is nothing to worry about, I just can’t imagine how you must have felt waiting to hear that great news.
Peewee. 😅 Glad the T is being kind to you so far, honestly I have had 2 now and far prefer the side effects with this one. Do you have to inject your tummy every day for the first. week to boost your immunity levels? I am having to do that.

GabyF: Every cloud has a silver lining missing chemo and enjoying life without SE’s...enjoy x

CatGarland: Hoping the T works for you too as FEC made no difference for me but T did after just one dose so 🤞🤞

I had my meeting with the surgeon, as expected not keen to do double mastectomy and remove a healthy boob. To go back after genetic blood test result in mid December to discuss further. Definitely going to push for it though.
Met with the plastic surgeon to discuss reconstruction options...a bit daunting. However one option involves getting a free tummy tuck thrown in 👙😀...sounds good but big op involved. A lot to think about!

Love to all and minimal side effects💕❤️
Member

Re: September 2018 Chemo Starters.

Thanks GabyF. All went well ... so relieved I nearly hugged the nurse 😂 She referred me for an ultrasound but no cause for concern ... thankfully! Bit vague about it really but they think breast tissue has hardened probably as a result of chemo.

Sorry to hear you didn’t have your chemo yesterday although it is quite nice having an extra week off 😊 I hope you’ve got some nice things planned ❤️

Hope you’ve had a good day today CatGarland and are still SE free 🥊 💪🏻 Noticed my arms feel itchy today but apart from that so far so good (can’t help but thinking this is the calm before the storm but hopefully not ha ha).

Big hugs ❤️ Lisa xx
Member

Re: September 2018 Chemo Starters.

Evenin everyone,

 

Lisa - I hope your mammogram was ok today. It must have been a very stressful morning for you. Thinking of you! HeartAs for waking up early, it's really annoying. I tend to be awake for a couple of hours at night on the steroids - I try not to stress about it and just make sure I get some extra sleep after lunch. You've got a very good excuse for an afternoon nap!

 

My chemo didn't happen yesterday as my neutrophils were too low. Someone somewhere on the Forum called them "Naughtyphils" which definitively applies to mine! I was a bit disappointed initially, but actually now I'm quite pleased, as it gives my body a short break from all the strong medication. In fact I feel so much better today, still tired, but no aches, cramps, funny tastes etc. which makes a very nice change. Hopefully by next week, my bloods will be back to where they should be and I'll be ready for another round of SEs!

 

Hope everyone has a reasonable night. Gaby x

 

Member

Re: September 2018 Chemo Starters.

Morning ladies.
Gaby that is fab news about the MRI, so pleased for you.

Lisa-T, I had my first T yesterday along with my H and then my first P the day before. so far no nasty SE to report. I just felt my lump and it feels like it has reduced in size slightly, it was 5-6cm (depending on who I asked) I’m not going to get my hopes up as the FEC didn’t reduce it at all but it did prevent it from getting larger which is fab.

Hope you all have a good day xx