69029members
362712posts
cancel
Showing results for 
Search instead for 
Did you mean: 

October 2020 Chemo Starters

Highlighted
Community Champion

October 2020 Chemo Starters

Hi 👋

 

This thread is for anyone due to start chemotherapy in October 2020.  I’m sure others will be here soon but please introduce yourself and you can all help one another through this phase of your treatment.  If you have any questions please post away on here and others in the community will watch over you whilst you are getting started.  Once you are into it you'll be pretty good at helping each other.  You can also ask the nurses on this forum if you have any concerns.  In the meantime, the top tip is always to stay well hydrated throughout chemo, aiming for 2 litres of water per day and get a thermometer and check your temperature every day.

 

Here is the BCN guide on chemo:

https://breastcancernow.org/information-support/facing-breast-cancer/going-through-treatment-breast-...

 

Here’s an excellent article for anyone concerned about hairloss. That’s pretty much everyone starting chemo: https://pinklotus.com/powerup/breastcancer101/chemo-hair-loss-and-menopause-hair-too/

 

Here are some apps which can help to keep you on track: 

https://breastcancernow.org/information-support/support-you/becca

 

https://www.nhs.uk/apps-library/owise-breast-cancer/

 

https://www.careology.health/

 

I finished my chemo in October 2017 and doing very well again now.  Here is my story which has some chemo tips on how I coped which were collectively shared from others who had gone through the same from this forum:

http://lifeafterlola.com/


If you decide to set up a private group its good to stay on here also during treatment as I know from experience there are some people who watch but don't immediately pluck up the courage to join in.  Your conversations can be a real comfort to others.

 

293 REPLIES 293
Highlighted

HI Linflo,

I'm on track for 3rd and 24th December too.  My unit say the only day they won't be open is Christmas Day itself.  My daughter says she's happy to cook Christmas dinner but it will be bangers and mash - my foster child is delighted with that option! 

I've opted for Click-n-collect for my shopping.  I'm trying to be good and stay in as much as possible but sometimes there is no option - my dad is 88 and not too well so I do a fair bit of running around after him. 

Roll on spring....

NAJ xxx

Highlighted

Hello everyone

i got an email and a letter telling me I was vulnerable! I’m desperate to go shopping, I love the Christmas atmosphere but have been sticking to the rules. I too can’t believe how normal I feel after a bad first week. Managing to go for local walks. I saw the offer of priority shopping slots but it asked if you had anyone to shop for you. I have 2 daughters who can do it for me, so felt bad registering, was tempted though. My next session is 3rd December then 24th, I wonder if they will operate as normal on Christmas Eve? I normally have everyone round for Christmas dinner, but think I will defer this year. There will be plenty of time to celebrate when Covid & cancer have finally gone.

Love to everyone, stay strong.

Linda x

 

Highlighted
Member

No letter for me either. I did have my gp call and she said oh I'm sure you will get one nearly Xmas 🥴🥴

It's so bizzarre to think how normal I feel after a bad week after chemo. 

 

 

 

 

Highlighted

Hi Jo22

no letter for me so maybe I’m not vulnerable 🤷‍♀️, the gap didn’t even offer me a flu jab but luckily I used to work at a pharmacy, and I asked them to do it just before my first session. Yes you are so right a good 11 day now before the next session, time to write Christmas cards, wrap pressies, put Xmas decorations and may even make a cake.

Make the most of good day, and all stay strong and safe xx💕💕💪💪

 

Highlighted

Hi Jo22

Yes, I've had my letter - I also got a guaranteed slot at Tesco for a delivery on December 23rd!  There has to be at least one plus point to this.  

My GP told me to take Omeprazole every day until I finish chemo.

Hope everyone is as well as they can be.  We're all a step further towards recovery and normality.

NAJ xxx

 

Highlighted
Member

Hi Jo22, 

I have had a letter to say that I’m clinically vulnerable. 
Mostly I’m being very good and not goo g to shops or pharmacies or anything, but I do the school run wearing a mask- just want some sort of normality for my little girl. I will admit to one sneaky trip to the post office to send my brothers 50th gift, drenching myself in hand sanatiser..

Highlighted
Member

Hi UMLydia and all,

Sorry just catching up after a nasty 3rd round, horrible sickness the day after but through it today - phew!

UmLydia -There are certainly lots of options for the reconstruction and not all on offer at all the hospitals. I agree that getting into a bikini and feeling somewhat normal is important for me too.

NAJ - Thanks for replying about the Omeprazole they gave me some on Thursday. When did you start taking it and did you take with with the metoclopramide and/ or Ondansetron? Or just when the acid reflux started? Thanks for the nativity link, will be nice to get christmassy I'm not feeling it at all yet.

CBB - Good luck if you do brave the shave, I agree the wig may be easier to wear without any hair although thanks York75 for the tip on the sock thing!

York75- Glad the itchy scalp is calming down, one less thing to be dealing with x

Linflo - I feel bad after round 3 as well but hopefully after day 3 it seems to subside and then just acid reflux. The Crown is well worth a watch!!

Mrs Q - Yes week 1 bad then weeks 2 &3 are good although like you I had an awfully crappy mood after round2. Not sure if that is just covid related though as the lockdown makes it so hard to be anywhere near normal.

Has everyone had their clinically extremely vulnerable letter from the NHS? 

Take care and happy weekend all. 

Jo xx 

 

 

 

Highlighted

Hi UmLydia, 

I just wanted to add that I had 4 lymph nodes out along with a breast lump at the end of august, and I have full movement (I can feel a difference when I do it, it’s feels tighter on the surgery side, but it doesn’t hurt to make the same movement) and only a small patch of numbness in my armpit.

So maybe how soon the feeling comes back depends on how many nodes they need to remove, and how they do the incision?

Highlighted

Hi Umlydia

i had a lumpectomy and removal of lump nodes under my right armpit, this was back in July.  Yes I was really concerned after the op as I couldn’t do much with my right arm. I am a really active person, with gardening, cycling, dog walking and aerobics but I was determined that I wouldn’t let the op get me down. I made sure I kept up with the recommended exercises, which were hard to start, but to date I have the same movement in that arm as previously, all be it still numb in my armpit. I know you have to me much more careful about scratches, infections, sunburn etc but now a days they seem to think we can exercise as normal.

Good luck which your future treatments, I’ve got session 4 of FEC-T chemo in 2 weeks 😬 💪💪

Highlighted

Hi Jo22 

Thanks for your reply that is really helpful as I haven't had a consultation about reconstruction options yet. I am quite thin and love swimming and being active so I suppose implants will be the best option for me too. Unless they can just use bum fat gots lots of that ha ha. I don't care much what the new breast looks or feels like, I just want to be able to wear a bikini without feeling like a freak and go back to not having to think about my breasts.  I'm more worried about the lymph node surgery  as I think it could affect my clarinet playing. But I trust the doctors and i will just do the exercises then and stay positive. Its true the only thing that matters is getting better and seeing my kids grow up. 

I had a scan yesterday and they couldn't see a reduction in the 7cm tumour.  But the doctor said since it is not a lump but more like a petrol spill (!!!!) then they can't see if the microcalcifications are still cancerous. And that after two sessions is still early to tell. Still nice that they did the scan to check and I'm sure they know what they are doing. 

Hope cycle 3 is not bad. It is like a roller coaster and a very strange experience and its great to be able to share it all together. Lots of hugs to everyone. 

 

Highlighted

Hi Linda,

im sorry you are feeling rough this time. 😢

I have Trastizumab ( Herceptin) in injection form 3 weekly, and I don’t have any side affects from that bit.. So hopefully it won’t be too bad for you. 🤞🏻

The first time I had it I had it, I had it on its own, and had to wait in the unit 6 hours to see if I reacted to it. Nothing. I still felt totally normal the next day. 👍🏻

Highlighted

Hey all... I'm guessing we are all well in the midst of chemo etc now. I have deffo found I have a crappy 1st week with ec and then the next 2 weeks I'm more or less myself. 

 

Half way through my ec now and waiting for my next in just over a week. Then on to docetaxel. Its all deffo going fast. Praise the Lord.

 

I've noticed after my 2nd Ec my mood was pretty low I was very teary and felt scared. I just keep thinking it's coming back. 😔🥴

 

 

Highlighted

Hi not a jockey, What a Wonderful life is my favourite Christmas film, enjoy. I call that COVID brain, I really struggle with that.

I had my mammogram 2 years ago which surprised me when I found the lump because I thought they should have picked up on it with the mammogram, the said they will look into it, but what’s the point now, just have to get on with it.

we are all strong and we will survive, as said in the song 😀😀

Highlighted

Hello

NAJ, I had a clear mammogram in 2019, yet this year I had a 6.5cm growth that had spread to my lymph nodes. I’m one week into my third cycle & have to admit this is the worst I have felt. Very tingly, shaky & sickly. I’m still eating like a horse though, and food tastes so good! I feel like I’m going into the unknown next time as having Pertuzumab and Trastuzumab, as I’m HER2 positive. I’m hoping I feel ‘normal’ again soon, think I’m going to start watching ‘The Crown’, been told it’s really good.

Linda xxxxx

Highlighted

Hi Chesterbrownbear and Linflo

I'm feeling slightly anxious about changing to Docetaxel for chemo No. 4.  My chemo nurse said it often feels like you've got the flu.  I have a telephone appointment with my oncologist a couple of days before my next cycle so it will be interesting to see what she says.

Did either of you miss screening?  I should have been called for a mammogram at the end of March but of course all screening was stopped.  I found my lump in June and when I got my pathology results post-surgery the cancer had spread to my lymph nodes.  Feeling a bit like a covid casualty.

This cycle has been slightly easier than the previous two but I still feel slightly 'off' and incredibly tired.  Hoping to feel 'normal' within the next few days.

York75 - I've been doing my Christmas shopping online too though I haven't wrapped anything yet. One of the drugs says it can cause involuntary jerking -  I guess that's the reason two copies of 'It's a Wonderful Life' dropped through the letterbox today. 😊

Highlighted
Community Champion
Community Champion

York ❤️ Once all your treatments are done so nothing interferes with anything 👍 keep doing it every day 👍 when eyelashes start coming back get the mascara on straight away no matter how short it trains the lashes to curl up as they grow back out rather than straight out. Try and get some of those small mascara wands they use for sampling mascara on beauty counters (you should be able to get some off Amazon) 👍 step by step 💃🏻💃🏻 You are all doing amazing and don’t forget to tell yourselves how fabulous you are because you are ❤️ Everyone is ❤️💕💕Shi xx

Highlighted
Member

Thank you Shi for all your lovely tips. I will buy the suggested products and keep fingers crossed they will help! 
I have never tried having short hair before, so you are right, it will be a great time to try some different styles! Xxx

Highlighted
Member

Thank you Jo22, 

most of my hair seems to have come out now, and with Cetraben emmolient in the bath, and an Eucerin ‘itchy scalp oil’ it seems to calm down at last.

I like to wear headscarves at home, but yesterday I wore my wig most of the day and it was more comfortable with the ‘sock’ thing on my head first. 

In my better weeks Christmas is a great distraction, I have started putting up bits of decorations already, and wrap a few presents at the time, in place of the usual mad dash to get it done!

Also hoping it will be dry in the last couple of days before my round 3, so I can tackle the garden ready for winter.

Hugs to all!

Highlighted

Hi linflo58 and not a jockey

I must admit I am struggling after my 3rd session, and my chemo brain is nuts, really struggling with normal daily activities, hate to think what Christmas presents I’ve ordered 🎅🏻. Like you I am concerned about the next 3 rounds, no one has said how they differ yet.  All I know is I’ve been given those pesky steroids to take a day before 🤷‍♀️
good luck all xxx

Highlighted

Hi Jo22, not braved the shave quite yet as trying to get through my last session, which seems worse than the other two. I think next week will be d day.  Also I think my wig will sit better without hair, my daughter though my wig was so good it looked as though I’d just been to the hairdressers 😀. Yes I’ve also bought some Hygges, they are great!

stay strong xxx

Highlighted

Hi everyone

Just caught up, everyone’s journey seems to differ. I’m halfway through, had 3 EC, but next 3 cycles are different. Had a mastectomy first, & lymph node removal. I recovered well, but the exercises are important. I had 2 video physiotherapy sessions which were very helpful. Under my arm is still numb 3 months later, feels weird when I spray deodorant. Lost my hair after 2 weeks, deliberated about the cold cap, but from comments read, glad I didn’t bother. My daughter bought me a ‘fringe’ hairpiece which I wear under a turban style hat. I feel better wearing this in the home. I tend to wear my wig outdoors. My lips & fingertips tingle a lot, think this is from the injections. On my previous cycles I have started to feel better once these have finished. I had a lovely soak in the bath with a Lush bath bomb last night, listening to Smooth radio. Very relaxing indeed. Think we need to pamper ourselves now & again. Take care everyone xx

Linda

Highlighted

Hi Jo22

3 down and 3 to go but the next three are docetaxel so I don't quite know how that might go.  Then radiotherapy.  This has been the easiest cycle so far but I think that's down to heading off the side-effects by taking the omeprazole and dulcolax and changing my diet slightly.  I am now having a bit of trouble sleeping but I can get plenty of rest through the day.

Recommended watching for anyone who works in a school - The Flint Street Nativity.  You can watch it on youtube or get a copy from ebay for a couple of quid.  I used to show it to my year 8 class every Christmas and they always loved it but it's great fun for adults.

Hope that everyone is coping as well as they can and enjoying some of those cheesy Christmas movies.

NAJ xxx

Highlighted
Community Champion
Community Champion

York75 ❤️ I imagined chemo like going into a chrysalis and then emerging as new butterfly 🦋 after, and googled lots of short hair styles looking forward to trying new styles as it started to grow back 👍 after treatments had finished rubbed extra dark Jamaican black castor oil on head for 20-30 mins then washed off with lush red dot shampoo bar called new 👍 it’s a magic formula that’s been passed down the threads and after treatments all finished worked 👍👍 if you get chemo curls and don’t want them invest in mini straighteners and rock a Mia farrow 👍 it is a bit like having a kinder surprise head, it can come back different colour and curly but it doesn’t matter it’s hair and you will enjoy rocking different styles. You are all doing amazing 💪💪💪 keep focused 💕💕Shi xx

Highlighted

HI CBB,

I'm really with you on that. I had an awful headache too and I wouldn't say its saving my hair. My husband thinks I should shave my hair too but there are still some bits that make it look normal with a hat on so I'm reluctant and not brave enough yet. Hat off to you if you can do it. 🙂

How do you find wearing your wig? Mine seems to itch after a few hours and I wonder if it's because I have hair? Do you wear the wig/ scalp cap thing? I bought some hygge headbands to wear around the house which are more comfortable but I know everyone is different.

Best of luck if you choose the shave xxx

Highlighted
Member

Oh York75 I really agree with you. The impact of my hair loss has been really surprising too! I think for me the hair loss is such a visual and constant reminder of what we're going through even though I'm feeling ok at them moment. I'm sorry your scalp is itchy and sore, have you tried cera ve its supposed to be really good, I think its recommended for eczema etc. Are you going to cold cap next time?

I think you are right it is good it's winter and to some degree that covid is keeping us all inside more than normal. There is certainly no fear of missing out. But on the flip side we aren't getting to see friends and family or go out for dinner as a treat and I feel like that has a very big impact on happiness levels. 

Keep strong everyone xx

 

Highlighted
Member

Hey UmLydia,

OH yes I've been thinking about it for weeks! I was diagnosed in early June and wanted mastectomy then but they wouldn't do it and then had 2 lumpectomies which failed. So yes after all that I want implants as I need to feel like me. I can't use any of my own fat as there isn't enough and I don't want the back flap one as I love paddleboarding and it really affects your back strength. I don't know if that matters for you playing the clarinet?

A couple of people I know have had immediate reconstruction but it does depend on your surgeon. A friend in the states chose to wait in case she changed her mind. If you have it in the lymph nodes they will no doubt remove those during the surgery and then you just have to keep doing the exercises they give you which seem hard to being with but they soon become easy.

How nice to be in France, is the treatment going ok so far? Hopefully when you are better covid restrictions will have lifted and you can get back to normal!!! As can we all!!

Acid reflux has gone very suddenly just stopped but its cycle 3 on Thursday so its like getting on the rollercoaster all over again!

Take care. xx

Highlighted
Member

Well done on getting past number 2!

I have the exact same in my back & shoulders, really sore after the injections and still are now even though I stopped over a week ago. I actually thought I'd been on my phone to much so stopped using it for a couple of days! 

I'm the same as you with the cold capping so I've decided that I'm not going to have it this time (3rd cycle on Thursday). I just feel as it's left a big patch of baldness that I won't have my own hair visible for a while so might as well be comfortable during the treatment and not be there so long! But each to their own its a hard decision isn't it.

Hope you continue to feel well. 🙂 xx

Highlighted

Thanks NAJ, they did give me some of that right at the beginning but I didn't feel that I needed it then. I'll try it after this weeks session. I'm doing 6 cycles last one on Jan 21st all being well then 6 weeks recovery before surgery so they say. How many more have you got? xx

Highlighted

Chesterbrownbear, does this mean you are half way through? That is good news.

I didn’t cold cap, and on day 10 of cycle 2 my hair has almost all gone. It adds insult to injury that the ones that remain are mostly my grey ones! 

I have found that my head has felt quite itchy and sore, so I have not used my wigs as much as I expected to. Maybe I will use them more when it settles down. The bald look does not suit me! It gets me a bit down to see myself like that, sometimes. Then I have to remind myself that it is temporary, and a sign that the treatment is working.

Im pleased that it is winter and lockdown and I’m not at work, it doesn’t seem to matter as much as home, I just have have to spruce myself up a bit for the school run, and with hats and scarves and masks it really doesn’t matter what I look like.

I find it a bit strange that I think about the hair loss as much as I do, as normally I’m not very concerned with my appearance. I want to look nice, but normally it doesn’t really affect how I feel about myself or my sense of self-worth. I guess the cancer also takes away from us other ways to feel good about ourselves - achievement at work, fitness goals, feeling like I can get things done at home and try to be a good mummy- all of these things take a big knock when you are to exhausted or unwell to do much half of the time. But we will get through it, and come back stronger. Meanwhile, thank goodness for chocolate...😉

 

Hang in there, everyone! Xx

Highlighted

Hi whiters14

I have just had my 3rd fec last Thursday, the first 2 weren’t too bad, but this time I had a headache throughout the session, even though I take paracetamol beforehand. I think I am going to shave my hair shortly, as you say it is a pain hiding the bald patches and the grey badger look isn’t good, also the extra 1.5 hr after when all I want to do is go home. I’ve got a great wig so I will make more use of that.

Good luck in what you decide and stay strong . 💪💪

Highlighted

Hi Jo22

Have you started thinking if you want breast reconstruction? I have chemo until February, so it seems far away, but have started trying to research options a bit. I'm terrible at making my mind up. Apparently there can be so many complications with breast reconstructions that sometimes I think why bother. My first reaction when I found out I had cancer was take it off- I don't care.  From the beginning (end of August) they said mastectomy. With covid they will probably put off breast reconstruction anyway. 

I have some in the lymph nodes under my arm as well. Not sure what they do about that. 

I will need radiotherapy after the surgery. 

I live in Western France, in a quiet town and rural so at least I can go out for nice walks. They make me feel so much better. Its not cold but rainy and gloomy. 

I will be off work all year.  I teach clarinet and love my job so was really upset when the doctors said I wouldn't be able to work.  But teaching music has been banned anyway with the latest lockdown so finally I'm not missing much. 

Hope your acid reflux gets better.  I haven't had any mouth ulcers this time!! Fingers crossed. Small blessings...

Highlighted
Member

Hi everyone I hope your all having an ok weekend.

I had my second EC on Tuesday and although not feeling as sick this time I feel like I’ve been a zombie. I’ve managed a daily walk but that is about it. Oh and heart burn I never had that as bad last time ouch.

Does anyone get really achy after their third jab oh my my neck shoulders back are sore to touch! 

Even though I cold capped my hair has really thinned and getting some patches that are harder to hide. Need to make a decision what to do going forward so I give up with the cold cap??

On the bright side it’s Sunday roast today and hopefully the day to turn the corner and start feeling more human. 

Highlighted

Hi cab

 

Hope your chemo went okay yesterday and that you soon start to feel more back to normal.   I’m on a different regime to you, I have one more EC, then I start 12 weeks of paxitacil, which sounds like a weedkiller! I’m still getting used to wearing my wigs, I bought a second one online, one is a grey bob and the other short and blonde.  I think I’m much more aware of it then anyone else is, so I will just have to get over myself😕.

 

Highlighted

Hi Jo22

 I had terrible acid reflux after chemo and my GP gave me a prescription for Omeprazole.  She told me to take one tablet a day for the duration of chemo and it's been fantastic.  Might be worth giving your GP a call.

How many cycles of EC are you having before your op? Good luck with everything.

NAJ xx

 

Highlighted

Hi SU

Hope the antisickness medication works better for you this time and that you soon start to feel better after this round. 🌞

Highlighted
Member

Hi UmLydia,

I haven't been on for a while as I struggled after my 2nd EC too. I had awful acid reflux which has now thankfully gone, I had a couple of really down days but they may have been COVID related and now I'm back to feeling ok. So I would say 10 days to feeling better for me.

I too am having mastectomy after EC as I had 2 failed lumpectomies in July & August. Its daunting to think there is more after all of this isn't it. Very rough going. 

Whereabouts in France are you? I'm on the edge of the Pennines in Yorkshire  so its starting to get cold now!

xx

Highlighted

Hi All, I can’t believe it’s been 5 weeks since my last (and first post).  Time goes so fast with each Monday as chemo day, then working the other 4 days from home, trying to go for walks, cook meals etc.

I’m sorry to hear that some of you have not been having a great time. But I also find it interesting that the side effects differ so much from person to person.  Also interesting is how many different treatment plans there are out there with so many variables in diagnosis etc! I guess we have to look at the end game, however far down the road it is for each one of us.  My regime is a long one as I am Triple Negative so I don’t have the option of injections/tablets after treatment.  12 weeks of Paclitaxel and Carboplatin, followed by 4 x EC cycles which takes me to mid Feb.  Then surgery then radio. 

It makes me nervous to hear the not so good reports of those of you on EC.  I just had week 7 of weekly Paclitaxol and 3rd of 4 Carboplatin.  So far so good. I’m getting a bit slower with the walks and get a rash every now and then which I’ve got cream and tablets for.  The cold cap seems to be working up to a point, but my hair is now very thin and I wonder if it can hold on once I start on EC.  Time will tell and I have a wig on standby just in case. Also wondering if when I start the EC will be the time to call it a day with work for a while.  I guess I'll just wait and see how I feel at the time.  Work are putting no pressure on me, I just like the normality of carrying on while I can. 

I’m loving the suggestion of watching Christmas!  Think I will make a list on Netflix for the weekend. 

I hope those of you going for treatments in the next few days get on OK and the side effects are manageable.

Take care everyone.

Ang3lf4ce

Highlighted
Member

Hi everyone thanks for your support. Feeling ok again. Will definitely tell the unit that the antinausea drugs didn't work this time. 

York 75 I hope your scalp irritation calms down soon, must be very unpleasant. I've lost most of my hair. I bought a kind of cap from masumi headwear, they are really soft and comfortable and have space in the top so they don't touch the scalp. The cap collects the ones hairs still falling out.  I like headscarves, I drape them round the cap. I love the photo of you and your gorgeous little girl. 

Linflo my tumour is HER2 positive too.  I have some cancer in my lymph nodes as well. I still get strange sensations despite the chemo. It is the thing that worries me the most. Did you recover quickly after the mastectomy ?  I still have one round of EC then move onto three rounds of docetaxel before surgery. Then I will be on the HER2 drugs for a year. And hormone therapy as well.  It seems crazy i felt so healthy and well before i found the lump. 

Karen19 i had a picc line put in before I started chemo. I had to wait a week for the scar to heal before starting chemo, but now when they put the needle in i don't feel anything or have any reactions. Hope it goes well for you. I love your attitude about enjoying the time when we feel ok and focusing on getting better. 

Big hugs to everyone. 

 

 

 

 

 

 

 

 

 

 

 

Highlighted

Hi UmLydia,

I'm sorry to hear you are having such a rough time. Must be especially tough with young children too.

I had my op first and it wasn't nearly as bad as I feared.  It was day surgery and I had no pain from the wound.  The exercises get easier every day and are essential.  

Good luck with the scan next week.

NAJ xx

Highlighted

Hi Carmen and Karen19

I have seen my oncologist this morning and it seems I was given the wrong antiemetics after my last chemo so he is prescribing me something beginning with Z which you take 3 times a day no break between treatment so hopefully I won’t feel as bad tomorrow.

I had my picc line fitted this Monday, the procedure was straightforward with no pain just a strange feeling in my armpit at one point but nothing to worry about.  After the local had worn off, my arm hurt where the line goes in so I have taken paracetamol for a couple of days but it feels much better today.

Thanks xx

Highlighted

Hi everyone,

It sounds like we are all having lots of ups and downs. It helps so much to keep an eye on the end goal of being cancer free and a clean bill of health going forward 🥳

I spent the weekend doing lovely things, eating nice food, long walks, couple of glasses of Prosecco and of course, a few Christmas movies 😂, but then Monday was another story...

My hair had been shedding for a few days and I decided to wash it and horror upon horror, it became so matted in a solid clump on the top of my head and could do nothing to get the matted hairs out. Cut a long story short, my lovely mum came over and spent 3 hours trying to tease the hairs out of what looked like a bird’s nest. 50% of my hair came out on the crown of my head and I now look like Gollum in The Hobbit!!!!

As if that wasn’t enough, I then had a call with my Oncologist who postponed my next cycle by a week due to the aches in my arm and now have to have a Picc line on Monday. I noticed that you have had one put in SU. How are you finding it?

Onwards and upwards, just ordered my wig and going to have a big slice of carrot cake and long stroll with my other half to compensate for a tough few days 🥰

Highlighted

It’s horrible knowing that you are going to feel pretty rubbish again after starting to feel better. I suppose trying to think that feeling ill won’t last too long has helped me cope, and that each dose is destroying more cancer cells. But sometimes it does feel so unfair. 

Good luck for Thursday. 🌞

Highlighted
Member

I’m so sorry to hear you have been feeling so poorly , UmLydia. That sounds really tough. Like Shi says, hopefully if you talk to your unit about it, they can help adjust your antiemetics so you don’t have to suffer like that next time. Sending hugs!

I have also found cycle 2 harder than the first, although nowhere near as bad as you. Just more tired and dizzy, spaced out. My hair is coming out so fast, if I leave my hair uncovered I look like I have just been to the hairdresser, covered in itchy little hairs. If I put a wig or hat on, my scalp feels so itchy sore. I also have rashes and itching anyway, my unit says I can take antihistamines, which helps a bit. 
In case anyone else is suffering with similar things, so far I have found Cetraben Emmolient bath additive helpful with the itching, also slathering it on my scalp when wet and rinsing off has calmed down the redness and soreness. Also if I arrange a cotton scarf over my head and then round my neck, it covers my head without pressing on it, and the part round my neck stops little itchy hairs from falling down my top!

Otherwise I’m looking forward to joining  the Christmas movie gang- it will be a treat to watch some without anyone rolling their eyes at me! 😆😆

Highlighted
Community Champion
Community Champion

Umlydia ❤️ Please ring your team and let them know your antisickness meds didn’t work as well this round, your onc will be able to tweak your meds to help with this ❤️💕💕Shi xx

Highlighted
Member

UmLydia

Really sorry that you are feeling so bad, it must be awful. I’ve had 2 rounds of EC, my third is on Thursday. Luckily no severe side effects, and after 7 days almost feel ‘normal’.

its funny how treatment differs. My lump was 6.5cm, & I had a mastectomy within a couple of weeks. Felt better that it was gone. The chemo is a backup. Mine was HER+, so will be having herceptin with my 4th cycle onwards.

i do hope you feel better, take care xx

Linda

Highlighted

Hi everyone

I had my second EC on Friday and it was horrible, much worse than the first time. I arrived home at 2 pm and was sick throwing up non stop until about 9 am next morning. I couldn't even hold down water or the pills to feel better. 

After that I was just exhausted and luckily slept a lot. The kids were great, but its awful being in lockdown because ideally they would have gone to play with friends or have a sleep over so they didn't have to see me in such a state.

I will have a scan in 10 days to see if it is working.  I don't think the lump feels different.  Its a big lump 6cm. If they think it isn't working they will skip EC and change to the drug that targets HER2. 

Will force myself out today. Luckily kids school is just round the corner. Lock down and chemo is certainly a big challenge for morale. Kids in France are wearing compulsory face masks from age six all day at school. I was feeling so upset at that I was actually looking forward to this EC to have no energy to think. Certainly worked. Need to try to get into deep breathing. 

Does anyone else have a mastectomy to look forward to at the end of chemotherapy ?  Its rough going. 

 

 

Highlighted

Hi SU

Chemo 2 may not be as bad as you fear.  Worst thing for me with chemo 1 was the acid reflux but my GP gave me a prescription for omeprazole and no problem since.  Speak to your chemo nurse about getting meds to help you - are you due to speak to her before Thursday?  A neighbour said to me that the first one is the worst and then after that your body is better at dealing with it.  Well done on having your Picc line fitted - the thought of having one makes me feel positively queasy.

I think it's natural to have days when you feel a bit down or scared - the whole experience is pretty overwhelming but it will eventually be over and we can get on with our lives again.  I've booked a holiday with a bunch of biker friends next September touring Somerset, Devon and Cornwall - something to look forward to and help me get through the crappy days.

I think you need a prescription for some trashy Christmas movies - one a day with a comforting drink on a cosy sofa. 😊🎄😊

NAJ xx

 

Highlighted

Hi everyone 

I had my Picc line fitted this morning, I was a bit anxious but all went well and I know it will be better than being poked at to try and find a vein o. Thursday for chemo round 2.

I have been ok through the process so far but the last few days, I have stated to feel a bit down and anxious.  I’m not looking forward to Thursday as it means I will feel ill again and I have enjoyed feeling normalish this last week.  I even thought about not having any further treatment because this cycle of feeling ok and rubbish it what I get for the next few months.  I know that’s a silly thought and I will carry on.  But how do you get through it? It’s just so hard at the minute.  

Highlighted

Hi Chesterbrownbear,

I've got my 3rd chemo on Thursday too.  I had a really sore throat last week with white spots at the back of my throat.  My oncology nurse sent me a prescription for more fluconazole and that did sort it out.

Karen-19 Glad I'm not the only person watching those Christmas movies - there's a whole channel devoted to them!  Who knew.

I'm currently making marmalade and then I'm going to make strawberry jam while I have the energy.  I have a huge allotment and three freezers full of soft fruits so I need to do something with them.

Hope everyone had a good weekend and is keeping well. xx

 

Highlighted

Hi Karen19

oooh love the sound of Christmas films, especially with my chemo head ( having difficulties in memory etc). I am such a fan of Christmas, I’m currently making my own Christmas cards as I have energy, but after my next session (Thursday) I’ll have to wait until my energy levels come back. I’ve planned for wrapping presents and Xmas decorations when my energy levels are back.
Is anyone getting nasty spots, I got pesky white heads on my “hairline” on my neck and on my throat, plus a mouth ulcer, which I must tell my oncology nurse about.

Good luck everyone 💪💪💕💕