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September 2019 Chemo Starters

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Re: September 2019 Chemo Starters

Naomi
Sorry to hear your partner isn't being as supportive as I would expect but good that things seem to have improved. This is such a testing time in so many ways.
I also live apart from my partner and see him too infrequently (as his work is manic) but luckily have friends who more than fill the gap, I think we unfortunately just have to accept that times will be tough for us but also on our closest relationships and try and steer through the choppy seas as best we can without going overboard.
Also I guess I'm lucky in that I don't currently have enough energy to argue!

 

Beryl
Such a shame that your chemo has been delayed, I know it must be such a huge disappointment. Darn those white blood cell counts, but better to delay treatment rather than make you feel even more pants than by having chemo whilst your body can't cope eh? I'm not sure (though am less convinced day-by-day recently) that chemo is meant to kill/torture us.
On the plus side you've now got some timelines to operate within, and hopefully plan some fun things round them...I know I will be when I get mine next week.
With the sound of your cheeks am thinking Aunt Sally! I have taken on a cancer chic look of late, looking relatively gaunt with sunken eyes, dark circles and ever diminishing eyebrows and eyelashes. For some reason the boyfriend (not that I care) tells me I look good but the look on friends faces tells me otherwise...I would have fitted on the catwalk well during the heroin chic period (well my face would).

 

I must say the last few chemo's really do take it out of you don't they? I've been feeling rough all week, not comfortable in skin per se & can't get comfortable no matter sitting/lying/standing. With the residual peripheral neuropathy my feet are better when I stand & walk but have buggar all energy & enthusiasm to do so (what a quandary)..am going to drag my carcass outside today if it kills me.
Taste bloody buds have also deserted me, what do I want to eat? I really don't know but I'll tell you something that I'd rather drink bleach than taste persimmons again...euuggh!
Have also noticed, that despite always having 3 square meals a day (yep am force feeding self) have lost weight, am still a fatty bum-bum but am losing weight too quick and thought with steroids it was supposed to be the other way around?? When started this adventure was 98kgs (start August) am now 80kg with 4kg lost in last couple of wks (on the plus side if i had the enthusiasm to bottle this could make a fortune..the lengths people will go to lose weight & all).

 

Am hoping this is the end of my pathetic, post chemo time. Am going to cheer myself up by buying some new jimjams (in a smaller size!) as seem to spend most of time in them and suspect with surgery & rads things ain't gonna change in the new year..rock and indeed roll.

 

Sam X

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Re: September 2019 Chemo Starters

Beryl,

Just remember that you are far better having some white cells to protect you- particularly at this time of year. I was rushed into hospital with neutropenic sepsis a few weeks ago because I had none. I  had a temperature of over 40, a bp of 60/30, shakes, sweats, delirium and wanted to die.

Make sure your neutrophils are up and that you monitor your temperature religiously- you don't want to end up like me- even if waiting is a pain in the bum!

Member

Re: September 2019 Chemo Starters

Hi all, 

 

Well today hasn't gone to plan. Should have been last chemo. Platelets too low so despite recheck this morning have still have not made the grade.  Was tearful with disappointment as am now delayed by a week. Bring on those throat ulcers, belching, gagging and bloating for the Christmas feasting....

Am feeling deflated and fed up. I know it's protocol to keep me safe, but I had built myself up for a celebratory last session and now I have to sit and wait. 

Am not very patient either!

 

In other news, I  have date for surgery in  the New Year and  a plan going forward for rads early spring so that's positive at the very least. 

 

Over and out sitting here with my steroid induced pink cheeks in full flow, (like badly placed blusher),  looking like I am all dressed up and nowhere to go.... 

 

Beryl  x

 

Member

Re: September 2019 Chemo Starters

Thank you everyone, we seem to be okay for the time being.

 

 I had an appointment at the doctor today because I found a lump in my groin. He said it’s a cyst and has put me on antibiotics for a week and said to see the female doctor when she’s back as it could grow and she can double check it. He then said to me even if it’s something serious it won’t matter as you are already receiving chemotherapy. Was not quite sure how to take that. 

Member

Re: September 2019 Chemo Starters

Dear Naomi, 

So sorry you are having such a tough time. It must be hard going through this when your partner lives a distance away. I am thinking the weekends together are maybe something you both normally look forward to,  but right now is all about getting through each day with this physically and emotionally punishing treatment and disease. This is such a rough time on us and our loved ones. I hope you can get through this together. Am willing you on, take care and sending hugs.

Member

Re: September 2019 Chemo Starters

Hi Bethybluesky,

The construction malarkey is quite a journey in its own right! 

I have 10 year old twins so also quite self sufficient but also very demanding too. I’ve managed to keep home life pretty much the same for them, but put myself on strike this weekend and let husband take the load! Xx

Member

Re: September 2019 Chemo Starters

Hi Naomi,

hope you’re feeling ok. Your weekend sounds pretty s**t! 
I’ve argued with my husband too and it’s bloody awful although I must say we need to be cut a bit of slack. Unless you’re actually going through what we are no one will fully understand the emotional journey and we all cope in different ways. 
My chemo nurse did tell me that things do get more emotional in the latter part of chemo and we can feel more tearful. 
Being told to ‘toughen up’ is downright mean. Don’t ever feel guilty for trying to get through this, we should be putting ourselves first to help us beat this awful disease.

 

Sending positive vibes your way Naomi 😘😘

Member

Re: September 2019 Chemo Starters

Had a really crap weekend, huge argument with my partner. Got accused of being not as affectionate as normal and asked if I was being unfaithful. I got so upset and I cried, something she has made me do a lot this weekend. I broke down in tears Saturday afternoon because the reality of what I’m going through has finally hit me and even then she was still not very nice to me which caused our big argument. She then says she thinks my feelings have changed which they haven’t but I felt so unwell this weekend very lethargic and sleepy and as we only see each other on weekends (don’t live near each other)that’s where her accusations started flying about. I felt very hurt and angry by it all and find myself apologising for not being affectionate even though I didn’t realise I wasn’t being affectionate. She tells me she thinks she hasn’t been as understanding and sympathetic as she could be and that she’s finding it difficult to. I understand that she is and I always listen to her when she’s having problems but I just get told to toughen up and I need to get to grips with things or when I cry she says to me don’t cry. I feel so hurt still by how she has been towards me also comparing me to an ex who wasn’t always affectionate even though I said my situation is different. I’m sorry about the long post, I’m not even sure what I’m supposed to feel and maybe I am the one in the wrong. I just feel so upset by how she is and I’m not sure if we will get through this tough time. 

Member

Re: September 2019 Chemo Starters

Hi Kattz,

From a medical point of view, I  dont think the seroma was a problem, but my boob was sloshing around like a hot water bottle and I  was in a lot of pain. Some of the fat from my back that was used for my reconstruction has been reabsorbed and I'm due liposculpture or a small implant now. This will happen after radiotherapy because of the impact this can have on breast size and shape. My operation was in July, and although the large scar has healed well, things are still settling down.

My kids are 10 and 12, so reasonably self sufficient but my mother in law had the dog and my mum moved in to nurse me for a couple of weeks which I was incredibly grateful for. How old are your kids? Are you able to get help post op?

Member

Re: September 2019 Chemo Starters

Hi!

Bethbluesky:

what month was your surgery and how have you healed, did the seroma complicate things? 
I must admit I don’t want to be kicked out of hospital as a day case after my op. I just won’t be able to rest properly at home with my crazy kids! 
I've just had to google your licap procedure. Are you pleased with it? 
I initially presumed I would be fine for a reconstruction during mastectomy. The surgeon told me I don’t have enough of my own tissue(back and belly) so would need an implant. However as I’ll now need rads it’s not advisable to have an implant before this due to possible complications.
Thanks for highlighting arm exercises as a must do although I am really anxious at the prospect of developing lymphodema ☹️. 

Berilperil:

Lots of good questions for your surgeon. They must base surgery on MRI results as well as chemo response. I was always having a radical mastectomy regardless off response to treatment so, ‘thankfully’, I’ve not had to consider other surgical options. 
I went in quite unprepared as they only rang me about the appt 2 days before (they obvs forgot to book me in!). 
I met with the BCN afterwards and I’m seeing her again early Jan . Due to having rads I know it’s best to have the op minus any thoughts of reconstruction at this point. I’m happy to accept that for now. I just want it all gone now with clear margins. I have a node that needs removing from my chest wall... not the easiest to get to as I found when they tried to put a marker clip in 😫. 

I think this next phase has hit me more than I thought and the reality of this impacting on my life  so much has hit hard.

When anyone asks ‘how’s it going?’ be it friends or medical professionals I seem to give the same response. 
I say life at home is ticking along as ‘normal’ but I have hibernated from my social life. I think this hibernating is taking effect on me know and I’m fed up 😢. 

Meeting a friend for a cuppa in a bit though, she’s got boyfriend trouble so I’ll get the low down which will distract me from my own woes 😉

 

xx
  

Member

Re: September 2019 Chemo Starters

Hi Beryl,

Although I opted for a lumpectomy ( I  read that lumpectomy and radio are as effective as mastectomy), it turns out I  had about 80% of my boob  removed! I'd had my tumours injected with markers under ultrasound prior to surgery but it was still unclear where they started and finished so my surgeon took plenty of tissue to make sure- and did get good margins. They don't really know until they get in there and they want to make sure that they don't need to go back.

Member

Re: September 2019 Chemo Starters

Morning ladies, 

 

I am off to see the surgeon next week. I don't seem to have a clear understanding of the determinants for a lumpectomy vs. a mastectomy? If it's the latter how do they know if there has been adequate response from the chemo pre histology results? Is this why they delay reconstruction? Does both lumpectomy and mastectomy options have radiotherapy follow up? I have many questions! 

 

I have been semi prepared for possibility of further chemo post surgery (tablets) to kill any remaining active cells if the histology shows the chemo response has not been comprehensive. I think this is because I still have a palpable lump, I think they expected it to disappear entirely when they attached tags to the two sites I have back in August.

 

Feel very  dismal at prospect that there are more hurdles to face. I have lived in 21 day cycles and I think whilst this has been awful at times, it's also been a security of sorts. Coming to the end feels scary as I know have to shed this treatment security blanket and face the next stage. The challenge ahead for me is not so much dealing with the actual surgery procedure, in my mind it's the 'has it worked' question that will follow. This part of the triathlon is whole new reality of the cancer journey. As triple negative with no ongoing hormone treatment, I am pretty nervous and I feel like the stakes are just so high at every stage and phase. I do feel  great trust in my oncologist and surgeon, I am very thankful for that. 

Member

Re: September 2019 Chemo Starters

Hi Kattz 

I had surgery prior to chemo and had a licap flap reconstruction. Although I didn't have drains, I  almost wish I had because the seroma build up was excruciating! I do think you get booted out rather early and I  was pretty wired from anaesthetic and opiate pain killers but soon got myself onto ibuprofen and paracetamol. You do feel relieved and grateful that the cancer has finally been cut out which is probably the most important part of all this treatment! I had no understanding of the fact I would not be able to use my arm on the surgery side but did the breast cancer physio exercises religiously and have full movement back.

Member

Re: September 2019 Chemo Starters

Evening all, 

 

hope we're all getting through a relaxing and hopefully pain free Sunday night (with the help of meds for me).

A week into 5 th chemo with final one booked for 23/12.

 

Met the surgeon on Friday and have been booked in for 23/1.

Next phase has suddenly become a reality. I’ve been told I’ll probably need rads too ( I’m thinking this is due to my ‘partial’ response  to treatment) Briefly met BCN and discussed the ‘what next’ once the op is over. Not having a recon as I need rads so I’ve joined ‘Flat Friends’ Facebook group. Looking at options as a uniboober.

Has anyone had their surgery yet or are we all neo adjuvants? X

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Re: September 2019 Chemo Starters

Naomi

Good to hear from you, when on my one (and only, am glad to say!) paclitaxel (I was on a 2 wk dose) I also had the aching legs & hips so feel for you.  I do hope your team are giving you pain killers, and if they're not working have you told them, especially as you've got another 6 blummin' rounds of them.  Although that said doesn't seem like you're doing well on other meds eh?  Sorry to hear that.

I've been so luckily throughout as meds have prevented things that would have/may have happened (am not one to play Russian roulette with meds so generally do as I'm told). And, like you, have found that appetite has been pants at times but thankfully ( as am a little piggy who firmly believes in 3 square meals a day) when prepared food enjoyed it (apart from some of my new, time on my hands, culinary experiments...less said the better).

Onwards & upwards eh. And just over a month before the worst part of the cancer adventure is over..

Sam X

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Re: September 2019 Chemo Starters

Hi all

I've been quiet from me  but for no real reason other than just ploughing on.

 

I too have the feet issue on docetaxel and agree Sam this stuff is Cillit Bang with bells on!  So it's last one on Thurs of this jungle juice (keeping it seasonal here readers). Really hoping that my bloods hit the right 'scores on the doors', have a feeling my platelets are too low as my nose keeps bleeding! Don't want a delay by a week as is protocol or Christmas  feasting (and drinking) really will be a bushtucker trial! 

 

No Christmas decs up yet, am always a late starter on this, but have got my shopping largely out of the way. I have also been out to my first Christmas Lunch (shovelled in 3 courses, get me!!), this was a tad ambitious as I held onto it for a short while before making a hasty dash to a busy department store toilets (the shame)!! 

 

Let's see what fun and games this week brings... 

Bez/Pez

 

 

Member

Re: September 2019 Chemo Starters

Hi Sam

 

Hope you are doing okay.

 

I’m having weekly paclitaxel and have 6 more treatments to go. Hating the side effects of Joint/bone pain and my appetite is virtually non existent. I have a picc line and I get slightly anxious when my arm or shoulder aches or I get achy pains in my chest. The last 2 treatments I have had an upset stomach but can’t be given medication for it as it makes me feel worse. My skin is so sensitive that the dressings for my picc line irritates my skin. My last treatment isn’t until 14th January, will be glad when that part is finished 

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Re: September 2019 Chemo Starters

Hi all

Am hoping little activity means that you've all had no side effects or have finished chemo??

I've restarted EC after having been (literally) de-feeted by accelerated paclitaxel (peripheral neuropathy), managed to get oncologist to agree not to keep me on that nasty cillit bang, Barry Scott I now don't like you very much at all having put my disco dancing days behind me...Feet are improving, very slowly.

So all jolly good here and looking forward to my final (yays all round) EC chemo on 27th Dec, I just feel really sorry for then lovely nurses on the chemo ward who I know (yeah right) will miss me and my chat (!).

So its Christmas jumper (the boyfriends, who is 6'3'!) Everton style for bloods & doc meet on the 24th.

Hope everyone has that Christmas feeling, I've got tree up, presents bought and just cards to get delivered and written.

 

Sam X

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Re: September 2019 Chemo Starters

Thank you Naomi,

My oncologist has cancelled the Docetaxel cycle I was due to receive next week and asked me to meet with her to discuss things the week after.

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Re: September 2019 Chemo Starters

Thank you mini mad 

 

It does look like it’s bled quite a bit but I don’t feel unwell at all so I’m just going to leave it until Tuesday and see what they say about it at the hospital when I go for chemotherapy. I’m suffering with dreadful aches in my legs and my stomach and occasional little aches in the same arm as where the picc line is but I’m sure it doesn’t necessarily mean it’s infected well I hope not 

Member

Re: September 2019 Chemo Starters

Bethybluesky 

 

I’m so sorry that it’s been a rough time for you. Docetaxel is a very harsh chemotherapy drug and my oncologist decided it would be too much for my body to handle as I didn’t have good experiences with fec chemotherapy and now I’m having paclitaxel weekly. Maybe talk to your oncologist and see what they can recommend regarding treatment.  Sending you hugs 

Member

Re: September 2019 Chemo Starters

Hi Naomi40,

 

try not to worry that you still have tenderness around the entry point,  i was exactly the same,  it did settle down.

also seeing a little blood on dressings after 3 days , for me was ok.  As long as its dried blood and not fresh blood which i hope yours is.

re the strange taste in your mouth,  think i read somewhere on here to suck wine gums ??   Perhaps somebody else could answer this for you...  i didnt have that side effect.

good luck with your Paclitaxel,  i had 11 so if you wanna ask anything go ahead.

also i was told i would def lose all my hair around the 2/3 session,  it was nearer the 5/6 and i didnt lose it all.   Had bald patches but kept hair inbetween,  just buzzed it.

mini mad xx 💖💖

 

 

Member

Re: September 2019 Chemo Starters

Hi Naomi,

I think I'm going through early menopause too because I had 3 periods in the first 7 weeks of chemo and am now getting hot flushes and crying regularly! I think a picline is probably a good move because my veins are pretty mucked up from 4 rounds of chemo. My taste/ mouth was really sore and ruined with FEC and has continued with docetaxel. Hot chocolate is okay but coffee and tea are hideous. I have also just come out of hospital after a pretty severe case of neutropenic sepsis and am pretty sure I'm going to refuse my last 2 rounds of chemo. Has anyone else on here stopped? I am stage 2b, oncotype dx 22 and had 80% of my brest breast removed containing 3 tumours and 1 positive node.

Member

Re: September 2019 Chemo Starters

Evening everyone 

 

I hope everyone is doing okay xx 

 

I had my picc line in on Tuesday and my arm still feels sore on the access point. My dressings were changed after 24 hours but I’ve noticed on the entry part to my arm it looks like it’s bled a little bit. Maybe it’s normal and I don’t need to worry. I am a natural born worrier but I try not to be. What are other people’s experiences with the picc line post 3 days. I’m having dreadful hot flushes because the treatment is making me go through menopause which isn’t too bad to some extent but I don’t like being warm it makes me dreadfully grumpy and because the heating needs to be on for my children my bedroom has windows open and the fan on full speed. Is anyone else having similar problems and how do you cope. I have never felt as moody and snappy as I have been recently, I try not to snap especially at my children and sometimes I’m putting on a smile and trying to be cheerful so I don’t upset them but sometimes I think if I’m on my own I can’t upset anyone. And eating is a nightmare as I constantly have a weird taste in my mouth since starting paclitaxel ( if that’s how it’s spelt) on Wednesday and nothing seems to help with that. 

Member

Re: September 2019 Chemo Starters

Hi Kattz

Hope your MRI results also show that your boobs are hyper-intelligent, as mine did!

 

I had 4 ECs with minimal side effects, no sickness/nausea though one hospital stay but felt fine after day 1 and it was like a spa, unfortunately no lovely facials or massages (I did complain). The shrinkage was after 2 cycles and the less dense result after 3 so guess my lumpage responded better I guess - just shows how much we're all different and react differently to the drain cleaner eh?

I hope that the new (and what a mouthful) of drugs doesn't spoil your birthday, I think gin is very similar to chemo drugs so do have as much as you can.  I 'celebrated' by 50th with a chemo session in August so am having a queen like second birthday when all this shenanigans is over & done with.

Am , again, lucky that still have most of taste intact but unlike you can't face the thought of alcohol...most annoying but the liver is loving it!

 

Enjoy the birthday and glad its the final week so hope things improve after that.

 

Sam X

Member

Re: September 2019 Chemo Starters

Hi everyone,

 

Just a question, can I take nurofen with a picc line.

 

Hope everyone is feeling okay today 

Member

Re: September 2019 Chemo Starters

Morning! 

hope you’re feeling ok this morning Naomi 🙂

Good news on your MRI Sam! Like you I had shrinkage but stayed dense 🤪. I’ve got my 2nd MRI on Monday so 🤞.

Did you have 3 EC’s? I only had 2 and due to ‘minimal response’ I was moved onto pertuzemab, tratuzemab and docetaxil . They have said they are expecting a better response this time 😬. I bloody hope so , I have felt ropier this round. still managing day to day stuff on the whole(just cleaned bathroom 🙌) but just not felt good. Coming up to final week and birthday weekend so hoping I’ll feel like a few gins and finally be able to taste what I’m eating.

i might as well save money and rather than eat food eat the packaging it comes in... it all tastes like cardboard .

 

Onwards and upwards it’s nearly the weekend 😊

Member

Re: September 2019 Chemo Starters

Naomi,
Glad it appears to have gone well, easy to say but I generally find things aren't as bad as I expect. My port was also uncomfortable for about 2 wks post insertion but is now like part of me...all be it a strange lump above the good boob.

 

All,
All going well here, results of 2nd MRI showed that am less dense...soon to be hyper intelligent me thinks! Given shrinkage from MRI no. 1 and now reduced density they may not be able to find pesky lumpy/nodules area again so more body implants required (anyone know any good circus's as all I need is a split tongue and am there!).

 

New chemo (accelerated paclitaxel) tomorrow for a mere 4 hours, I know some are longer and I feel for you but 4 hrs is a long time even for gobby me. Its the nurses & my chemo companions I feel for. Am taking playing cards but given have invested in cold socks & gloves (trying to avoid peripheral neuropathy) not sure I'll be able to hold cards (plus cheating will be more challenging!) ...will however enjoy again looking like a twerp in the chemo unit (was a Russian cosmonaut in cold cap previously...an interesting look indeed).

 

Am told paclitaxel will be soooo much better than EC and as was fine on that (sorry all who aren't!) hopefully will carry on being Wonder Woman (with a few rough days!). Fingers (that aren't tingly and still have nails intact) crossed eh?

 

Hope everyone else is as daftly good.

 

Sam X

 

Member

Re: September 2019 Chemo Starters

Yes,  what you're feeling is absolutely normal 👍

i had my picc in for 12 weeks.  X

Member

Re: September 2019 Chemo Starters

Hi mini mad,

 

I had to wait 2 hours before my procedure and it took 35 minutes to do it. I was so emotional and really didn’t think I would be okay with having it done.

 

 I have slight discomfort in the site where it is and a little bit of discomfort in my chest but I’m guessing that’s normal.

Member

Re: September 2019 Chemo Starters

Hang in there Naomi40 xx thinking of you and remembering how terrified i was.

it wasnt Anywhere near as bad as i imagined it would be..   good luck..x

Member

Re: September 2019 Chemo Starters

Hi mini mad 

 

I have to wait another 45 minutes before they do my picc line which unfortunately isn’t helping my anxiety at the moment 

Member

Re: September 2019 Chemo Starters

Hey Naomi40,

 

i had no trouble at all with my picc line, just had it flushed through once a week n 

the dressing changed before my treatment.  No pain just the odd twingle for few days after but nothing really since it was put in.

maybe ur back home by now.. let me know how you get/got on.

mini mad xx 💖💖

 

Member

Re: September 2019 Chemo Starters

Hi mini mad 

 

Thank you for replying. I’m so scared about tomorrow and I’m trying not to think about it but I just feel so nervous. 
Have you had any problems with your picc line and how long have you had yours for. 

Member

Re: September 2019 Chemo Starters

Hi Naomi40,

 

i had a PICC line when i started my chemo,  veins are rubbish on my hands.

never regretted it,  took about 35 mins to put in.   Used for chemo,  bloods n any meds, no pain from cannula's.....

you can buy PICC line covers which look good and when you shower you need to keep the picc dry....good old cling film.... 

good luck for tomorrow n try not to worry about it,  Let me know how it goes.

mini mad xx 💖💖

Member

Re: September 2019 Chemo Starters

Hello from a very sunny Leeds ☀️☀️☀️

Glad to hear you are through the worst this cycle Sam. Bike ride sounds awesome, I love a bit of mud and manure is good for roses? Surely it’s good for us too 😉.

I’m just going through the mill😩 and feeling 😖😴🤧😕.  Just had to do an emergency dash to the loo in Sainsbury’s.... thank the lord there was no queue 😳💩

The kids are just not getting it ( they are only 10) however I think they are definitely of an age were empathy should have kicked in. Well, I think it might have after my explosion on Saturday! They were being little s*!**s and I lost the plot, with my husband too. Expletives galore 😬🤬!

 

I have given no apologies for my outburst and nor do I intend too. 
It’s also my big fat 50 on Saturday ☹️. I’m not really bothered about being 50 I’m more bothered that all my plans have now changed. Weekend to Bruges cancelled, marathon I was doing with friends in Spain cancelled . 
I haven’t wanted any fuss but different groups of friends are arranging meet ups for lunches, afternoon tea, theatre visit so it’s not all doom and gloom. 

I think if anything, this **bleep**ty cancer has highlighted how things at home aren’t that rosy 😔.

sorry for the self indulgent post . 
On a  positive note I got a critical illness payout which I didn’t even think I was entitled too! 

kate xx😘

 

Member

Re: September 2019 Chemo Starters

Hi everyone.

 

Due for picc line insertion tomorrow and feeling slightly apprehensive. Does anyone have a picc line and are there any do’s or don’t s with one.

 

 

Member

Re: September 2019 Chemo Starters

Hi All
Sorry there appears to have been some downs on here but am back fighting fit to provide the ups - the rough week in last post was thankfully just temporary and was in lovely Northumberland last week with an extremely muddy bike ride yesterday (think I consumed quite a lot of not only mud but also horse s$%t too - am sure that will help my treatment plan).

Am all done with the naughty drain cleaner, EC, and on Thurs on the cillit bang, paclitaxel, which I believe is a breeze compared to EC so hopefully should sail through (we will see eh?).
I've started Christmas shopping too and do hope that all are starting to feel a little Christmassy given the weather is now suitably cooler - which is a relief for a summer hating/tropical sweating northerner, bring on the frost I say! That said I do need to sort out my bedding plants so think will be doing very cold gardening this weekend, the neighbours will think the chemo has removed not only brain but all common-sense all together as they did last time I was doing it in the rain.

Hope all have had a good weekend with no incidents, some good food & rest and minimal/no side effects.

Sam X

 

Member

Re: September 2019 Chemo Starters

Thanks ladies for your responses. Much appreciated. X

Member

Re: September 2019 Chemo Starters

Hi Berylperil,

pleased you’re feeling better generally. I hate the disappearance of taste and that awful mouth feeling. It’s just a waste of food because it has no taste.  
No suggestions I’m afraid, I’ve had no soreness in my last few rounds thankfully. I do tend to eat boiled sweets to take away the foul, furry taste in my mouth. 
Do you find it clears up into week 3? 

xxx

Member

Re: September 2019 Chemo Starters

Hi Naomi, sounds like you need to talk it through with your oncologist some more. Keep us updated xx

Member

Re: September 2019 Chemo Starters

AC436E3B-C45C-4F19-ACD0-F9F0BF25315B.png

Not this brand but came in a dropper bottle like this 💜

Member

Re: September 2019 Chemo Starters

Hi

Thanks pinkflamingo will start googling to source the syrup. 

X

Member

Re: September 2019 Chemo Starters

Hi berylperil,

 

sorry to hear you’re having problems with taste - I was given some marshmallow syrup which a friend got from a local apothecary/ homeopathy/ health food store. It has been brilliant- just have a few drops on my tongue and it gets rid/ masks the hideous chemo taste long enough to be able to have a cup of tea or coffee or squash without it tasting horrid. I know I don’t drink enough anyway so this has been a godsend. 
sending hugs 

x

Member

Re: September 2019 Chemo Starters

Hello ladies, 

Sorry haven't posted for over a week. Am ok and feeling better. Am pleased to say that I have not had neutropenic fever this cycle. 

 

Along with my energy levels in the first 10 days particularly, my mouth has been worse this cycle. I struggled to know what to drink. I now cannot even smell ginger without feeling queasy. Tea and coffee have been foul, but this has improved. At the worst bit I  have just drunk fizzy  cold water. Has anyone found any good suggestions for managing this? My tongue was sore and very dry as was the back of my throat (like a couple of peas were stuck I couldn't shift). I have now got some biotene toothpaste (for dry mouth) and some saliva replacement spray which has helped.

 

Really feeling that this is marathon and not a sprint, the finish line is not yet in sight, but  this second half is taking its toll.  Sending hugs to all,  we will get there. 

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Re: September 2019 Chemo Starters

I’m really scared because of how the picc line is inserted and the vein that it goes into and I’m worried about the risks 

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Re: September 2019 Chemo Starters


@Naomi40 wrote:

Hi Everyone, 

 

I hope everyone is doing okay?

 

 I unfortunately have hit a bit of a low. I feel like I’m just doing what needs to be done without any real feelings. 

I have finished my 3 cycles of fec and have a scan on Thursday to see if my tumours have responded. I also have to see a nurse for picc line insertion even though I have said no to having that as that’s not what I discussed with my oncologist. 

I didn’t do well with the last 2 cycles of fec and I still have pain in my arm from the last 2 cycles and I felt more unwell with the 3rd cycle. 

My oncologist now wants me to have weekly chemotherapy instead of Docetaxel because of how my body reacted with fec. I’m so tired of being stuck full of needles and I’m so fed up of it all right now. 

I’m trying to be brave and strong but sometimes I’m just so fed up with it all.


Hi Naomi,

 

fingers crossed with your scan on Thursday 🤞

Why do you not want a picc line? It might be more straightforward if you have to have weekly chemo, it could take away the stress of all the injections.

you are really going through the mill with this treatment Naomi and it’s such a shame you have to try and feel brave when you shouldn’t have to if you’re feeling totally crap! 
At the start of this journey the Macmillan nurse spoke to me about how cancer treatment can affect people differently and our moods too. Have you spoken to your nurse/ doctor about how low this is making you feel? They should be able to give you something to help or contact Macmillan about a counselling session. It sounds like you’re not really getting the time with the medical staff for them to get how you feel. Xxxx

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Member

Re: September 2019 Chemo Starters

Hi Everyone, 

 

I hope everyone is doing okay?

 

 I unfortunately have hit a bit of a low. I feel like I’m just doing what needs to be done without any real feelings. 

I have finished my 3 cycles of fec and have a scan on Thursday to see if my tumours have responded. I also have to see a nurse for picc line insertion even though I have said no to having that as that’s not what I discussed with my oncologist. 

I didn’t do well with the last 2 cycles of fec and I still have pain in my arm from the last 2 cycles and I felt more unwell with the 3rd cycle. 

My oncologist now wants me to have weekly chemotherapy instead of Docetaxel because of how my body reacted with fec. I’m so tired of being stuck full of needles and I’m so fed up of it all right now. 

I’m trying to be brave and strong but sometimes I’m just so fed up with it all.

Member

Re: September 2019 Chemo Starters


@berylperil wrote:

Hi September gang, 

Feels like we're definitely in the trenches now. I was very pleased to get round 4 in last Thursday, but after the high has come the low.  Sunday passed in a haze of exhaustion. It was enough to have made it from bed to sofa and back again. Making myself eat and drink, but don't really want to, but know I have to. 

 

Today I feel a tad better, I think this comes from accepting that I will need to go through this  phase and there will  better days ahead. I cried alot in cycle 3, I now know how gentle I need to be with myself and others.  There is a pace and rhythm to the process my body needs to go through and I have been fighting it. This has come in the form of needing to achieve something everyday, and then feeling that I am useless (even saying I am pointless), if I can't do it. I am being a bit rubbish at being wife/mother/friend/daughter/colleague, I have sort of lost my identity in these roles, I am for this short while reduced from who I was. I have even said I am failing at this chemo lark as others seem to carry on and sail through, so why can't I? But for now this is me,  I am  not achieving  what I thought was important, my expectations on myself have realigned.  I am not keeping my chin up or carrying on to make sure life seems normal, because its absolutely not. Today I am still exhausted but I got up and had breakfast and  cleaned my teeth, and then crawled back under my duvet.  I have  got my lovely dog for company,  and I have pulled favours for the school run. I don't need to achieve anything more than just be, and tomorrow is another day. X


How are you feeling? Hope today is a good day xxxx

Member

Re: September 2019 Chemo Starters

Hi everyone,

 

how are you all? Just catching up and sensing we are all in the thick of it now. I’m currently having round 4 as I write. Last patient here!

i had two rounds of EC and mri showed a minimal response to the tumour so they cancelled my 3rd EC and I’m now having pertuzumab, trastuzumab and docetaxel.

Last 3 weeks have gone quite fast tbh. I did have episodes of tiredness and achey bones and that bloody awful taste in my mouth 😭 

I enjoyed a few gins this last weekend though as I felt ‘normal’!

 

when I met with my chemo nurse on Friday she told me to expect to feel emotional and tearful at times. It seems to happen more so on rounds 4 and 5. 
so if you haven’t been told this take care and come on here for some hugs xxx