Breast cancer

Affected by breast cancer? Join this group to share experiences and ask questions to people who understand what you're going through.

*** December Chemo Club 2019 ***

Giuliella
Posted by

Hi there, please don't feel scared, as I know exactly what you're experiencing.  I was so scared at my first chemo session, I was in tears when I walked in, even though you'd think at our age, we'd be past that, but no, it was overwhelming, the uncertainty of it all.  But, it was a relaxed atmosphere, everyone was quietly getting on with their treatment, some reading, some with partners chatting, some on their own, using their phones.  I found the time went actually quite quickly, as I watched all the nurses going about their business and I chatted to the nurse who administered the drugs, the one I started with was FEC and that was fed intravenously through syringes by the nurse, who stayed with me for quite a while doing this.  It was interesting to hear all about his origins in the Phillipines, took my mind off it all one time before my last session, which was on a new chemo this week Tuesday, of Docataxel when I felt scared all over again, for no real reason and then I found again, it was all okay.

The side effects are different for everyone too, so no two people are the same and you just need to keep a positive attitude about those, as you may not get most of them.  You could take a book with you and a drink, as where I go in Bristol, they don't offer any snacks, food or drink.  There is a machine in the reception downstairs and a coffee shop, but you'd need to buy that before going up to the ward, so I take my own, especially as I have food allergies and need to choose carefully, what I'd feel like eating without it making me feel sick.  I'm actually not able to eat much at the moment whilst on these drugs.  Maybe that's a good thing.  So please take comfort in the knowledge it's going to be okay, you're just scared of the Unknown, but the nurses will take good care of you and I bet wel hear back from you afterwards to say yes, we were right all along, nothing much to worry over at all.  Good luck today with your first session and may the SEs be kind to you.

Regards, Giuliella.
Mum22
Posted by

Good luck and lots of hugs for today. I am now the day after. You will be so well looked after and time will pass. Focus on the medicine being a cure. I was there from 10am till 7.30pm so long day but it still passed

Helen

xx

Northerner
Posted by

hope you feeling a bit better now it here and you can get on with it . You’ll be so much better than your imagination is telling you . Just remember this is you fighting the cancer .. so go kick it up the AR** !

YOU are stronger than you think we all are 

margaret x

One step at a time and ...Breathe !
xoxox
Margaret
Holbox123
Posted by

good luck for today, please take comfort that right through my experience so far it has been far worse in my mind than reality. 
I had 3xEC and 9xPaclitaxel - I was scared at the beginning and again when I changed over drugs and at every scan and none of it was as bad as I had anticipated. 
I am having a mastectomy next Thursday and the angst has returned, but although I can’t stop the worry I know this time next week I will be thinking that it wasn’t as bad as I expected. 
you will meet some wonderful people on this journey both patients and nursing staff and they will inspire you and in time you will be the inspiration for others. 
good luck today x 

the exact same goes for you for your treatment, good luck xxx

Eileen xxx

It’s going to be a long journey, but I won’t let this beat me, I’m still me xxx
Giuliella
Posted by

Hello again, thought I'd post you a good luck wish for your mastectomy next week, what bad timing though?  Right before Xmas, so I do hope that you can get home and enjoy the festivities with your family okay.  I had my mastectomy before chemo, as I wasn't expected to have chemo until the testing on the tissue was done and it was worse than expected, but it's gone and now I'm just going thru the chemo journey to make sure it's all gone, none lurking elsewhere if any escaped before detection.  I've just started the Docataxel and not good, thought I might get away with nothing, ha ha.  Feeling so aches all over and paracetamol aren't doing much to alleviate the pain.  Got tingling, numbness in one toe and one fingertip, also my tongue seems to be a bit numb!  Still, I did manage to get to the shops for food this morning, let's hope I can eat it now, as it all tastes so bad.  The only thing that tastes good is beef dripping on bread, fried and a piece of bacon in it!  I've run out of dripping now, so it will have to be olive oil, if I'm tempted to continue eating such naughty food!  I don't care to put all the fat I lost from my tummy on the reconstruction of the breast again, as I quite like the flat tummy area, but I think it is beginning to come back!  And that's despite me losing weight, how's that possible?

Anyway, good luck for next weeks operation and be assured, it isn't as bad as you think it will be, it's all in our heads.  The mind is a powerful thing and can let us down now and again.  You'll be out in no time and wondering why you were worried beforehand, so concentrate on Xmas and the knowledge that you're getting rid of the cancer.  Were you going for an immediate reconstruction like me, or not?  All the best and lots of bear hugs, virtual ones that won't cause any discomfort.  We are thinking of you.

Regards, Giuliella.
Blackcat20
Posted by

Hi

I know what you mean about the angst returning - I am feeling exactly the same at the moment while waiting for my mastectomy which is scheduled for 2 Jan.  I had a pre-op appointment with the surgeon and BCN yesterday, and got a bit of a shock when the surgeon said she had had a cancellation, and asked me if I wanted to have the surgery two weeks earlier, on the 19 Dec (same day as you, I think).   As I had planned everything around the date of 2 Jan, and am in fact going in to work on 19 Jan for a Christmas event and to see colleagues for the first time in 6 months, I told her I wanted to keep with the original date. The BCN also advised me to keep to the later date in order to allow a bit more time to fully get over the effects of chemo, as my docetaxel rash has only just subsided in the past couple of days. The appointment yesterday has definitely made me feel more nervous about the op (the sight of the enormous drain bottle freaked me out a bit).  I came home with a huge bag containing a floral drain bottle bag, a heart-shaped cushion and two “softie” prostheses of different sizes, plus a mountain of booklets about post-surgery bras, all of which made the thought of the op more real.  Still, as you say we have already got over the hurdles of different chemo regimes, side effects and scan results, so hopefully we will get through the surgery too.

I hope that you manage to get some time out to relax over the next few days, and that all goes well on Thursday.  This time next week the op will be over and you will be on the road to recovery.

Blackcat xx

Northerner
Posted by

Hi  

I just wanted to jump in and say you'll be fine . I know it was different for me having op prior to chemo but honestly it was a doddle compared to chemo . No nasty surprise SE lurking around . Take your pain killer meds prevention better than cure . By the 20th although you won't be running around you will be wondering what you were worried about . I know we all different but most of us have a very avid imagination .

same for you really I got one of those goody bags too . I got one bra before op so softie could sit in pocket but the best thing I bout was a bra extender which helped with swelling . I had my op on Thursday pm and drain removed Tuesday am . Wasn't too bad but I was in hospital til Tues pm so perhaps less worried about it than I would have been at home .

Best advice I can give you both is distract and relax as much as you can before your ops . Enjoy Christmas . You both can look forward to recovery in the new year .

Margaret x

One step at a time and ...Breathe !
xoxox
Margaret
Julus
Posted by

Thanks everyone you are all so supportive 

you were right it wasn’t as scary as I thought I meet a lady there who was on the ward with me for my second lumpectomy so we sat next to each other and chatted the whole way through 

the nurse managed to find a vain in my hand ( which I was frightened about after the blood on tuesday) 

as she put in the first lot of chemotherapy ( pink stuff can’t remember the name ) I was fine but the second part I did feel rough head spinning and blurred vision so she slowed it down and said next time she would definitely slow it down from the beginning gave me more saline then the bone stuff 

had to sit a while until spinning stopped but then went home afterwards I was surprised at how quickly the time went only 4 hours excellent 

once I got home then the sickness started  even though I’ve taken anti sickness pills I still feel so sick I’ve managed half a tin of soup and a bread roll but that didn’t stay in very long (wish I had a down stairs toilet) so after washing my clothes ( didn’t want hubby having to wash that out ) had to shower and pop PJs on still feeling rough and sick 

managed some cream crackers and so far touch wood they are staying down/in horrible taste in my mouth OMG!! 

managing to drink but that’s making me feel sick and taste awful but persevering with it although it’s not enough as I’ve got such a head ache and I’m almost sure it because I’m dehydrated head ache feels worse when I Lay down so sat up in bed but sickness feel worse when I’m sat up ‍ can’t decide which is the worse of the two evils 

my body feels like I have mild pins and needles all over and every muscle aches and feels heavy 

apart from all that the thing I’m holding onto is all of this is because the stuff they are putting in me is going to cure me and kill of any cancer left in me where ever it might be hiding 

take care and good luck everyone xxx

Life’s to short to feel miserable love and laugh each day 
Wittie
Posted by

Glad it went better than you feared. I had my second one yesterday (same as yours with the pink stuff I think) and also find it amazing how quickly time goes while there. I come armed with magazines and iPad and don’t use any of it :-)

Hope your sickness goes away too, last time I survived on rice crackers and mashed potatoes for the first days, and definitely try to drink a lot, it really helps. I am with you on pins and needles, haven’t figured out how to do anything about that yet. 
Best of luck with the next couple of days! Hopefully you get a break before Christmas too

Wittie
Northerner
Posted by

Hi glad it wasn’t as bad as you imagine . What chemo you on EC effected my eyes and sinus in the last 10 mins of infusion 

If your anti sickness meds not working you need to let your unit know . They can change your meds . Usually you are nauseous but shouldn’t Have to suffer vomiting . I know some do but new meds might help. Your taste buds change can be funny what you suddenly fancy lol eat little and often . Little pots of rice or jelly in fridge ready . Small cocktail sausages . I make soup so getting fluid as well . Water can suddenly taste disgusting so you’ll have to experiment to find a liquid you can drink . Keep a diary of SE a pattern should emerge then you can plan around them 

Margaret x

One step at a time and ...Breathe !
xoxox
Margaret
Giuliella
Posted by

I found fizzy pineapple drink called KA was good when feeling sick, as I was bad with my FEC on all three treatments.  Also, Diet Coke is another good one and I wouldn't normally entertain drinking this, so give it a try, get some of the tiny cans, so they don't go flat before you finish them and yes, water tastes dreadful, but it does flush the drugs through your system quicker if you can manage to drink it.

Im feeling sorry for myself today, had a very restless night with so much muscle pain, however I lay I was in pain and where I have multiple scars from the operation, it all hurt badly and it had settled earlier.  I also have tingling and pain in the soles of my feet and toes, and a bit on my tongue.  Food all tastes disgusting, how long will this last?  Does anyone know?  Was going to visit hubby in hospital today, but feeling so bad, I've put it off until Monday now, but feel so guilty about that.  I just want to be with him, it's so quiet and lonely in the flat without him, I miss him so much, it's making me feel depressed, not being with him AND feeling so ill again.  Although this was no.4 treatment, it feels like I've still got too long a way to go before I see the end in sight.  Must try to keep busy, take my mind off it all.

Regards, Giuliella.
Cheeboe
Posted by

sorry your having a bad time. I was the same vomited all first night then really rough first 2 days although I did feel a bit better in the afternoons and felt ok ish by day 4/5 so have hope xx if you cant keep fluids down then ring your emergency contact. Things I have found helpful so far are cold custard,digestive, fruit pastilles,orange juice diluted in water. Didn't find ginger helpfull at all. Hope you are feeling better soon xxxx

Blackcat20
Posted by

Hi

Thanks so much for your reply (and also for your previous one on the November chemo thread, which I tried to reply to but found the thread was locked).  Your advice is really helpful - I have ordered some bra extenders today, plus also a selection of post-surgery bras from Asda, which my BCN recommended because she says they are comfortable and good value. They don’t look very attractive (they remind me of the hook-and-eye corsets my grandmother wore when I was a child!) but comfort will doubtless be the most important thing after the operation.  Although my one affected lymph node is now clear following chemo, I am still having an axillary node clearance which my BCN says can cause significant pain in the armpit, so I have tried to choose bras which have good reviews from other people who have had a mastectomy and ANC.  The BCN gave me some brochures for more expensive post-surgery bras from specialist suppliers, so I will have a look for some more attractive ones further down the line.  She also showed my some silicone prostheses (similar to yours, I guess) which looked fine in a bra, and I think I will be happy with one of those.  I am glad that I have chosen not to have a reconstruction, as the most important thing to me now - after 6 months off work - is to get back as soon as I can to a more normal life, and to feeling useful again.  I will still have 14 more three-weekly cycles of the target therapies herceptin/perjeta to go after surgery, but my oncologist says this should be perfectly manageable while working full-time.

I have had a look on YouTube at videos of how to look after the drains, and also talked to some other patients in our unit who have had them.  I guess it’s just something I will have to adapt to, like the chemo was.  The surgeon says I will only have one drain as the lymph nodes are removed via the breast incision, but the bottle is huge (like a milk bottle) because it is sealed and designed to last for several days (you have to mark the drainage for each day on the bottle).  I would rather have a smaller bottle and be able to empty it each day, but I’ll just have to go with what the hospital says.  

I hope that your infected toenail is now getting better and that you will be able to have your EC treatment next week.  With any luck the worst of the queasiness will be over by Christmas.  I am now three weeks after my final chemo and the docetaxel rash on my face has finally disappeared, plus my tastebuds seem to be almost back to normal.  Hair is now growing fast, and coming back curly.  

I hope that you and everyone on the thread is having a good weekend.  For those who have just had a treatment and are under the weather, I hope that the side effects subside quickly and that you will feel better very soon. 

Blackcat xx

Northerner
Posted by

Hi

Glad that you found it helpful also that you seem to be settled with your decision on no reconstruction .

I had sentinel node with removal of 3/4 . Just make sure you do exercises and if suffering speak to your team. They sound like my team very supportive and informative .

The drain is like a milk bottle isn't it ,the bag does  help . It used to stand next to bed or chair remembering that it is there when you move is the problem lol also going to loo and turning around is hilarious ( in retrospect ) wrapping yourself up in tubing .

Asda bras are good value when I went to specialist fitter after op they advise waiting  because of size changing during treatment .I also got post surgery bra  not very pretty but functional at M&S outlet at dalton park . Is there one at the York outlet ?

Finally finished antibiotics felt dreadful last week EC nausea which lasts now for just about whole cycle then med nausea  . It was frustrating and  because all blood test including high marker for infection were clear . Problem was chemo unit felt that my immune system would drop Then infection would build .Hopefully no 6 on wed . Herceptin injection to start on 8th jan .

well done us how far have we come down the road ......

margaret x

One step at a time and ...Breathe !
xoxox
Margaret
Giuliella
Posted by

So it looks like you're soon to have your last EC chemo treatment Margaret, good luck.  I've been suffering too, with the new Docataxel, it seems my body is being ravaged, feel like a samurai is chopping me up, all the wound sites are so painful when they had settled down earlier, it's miserable.  Wonder how long this is going to last, as I wanted to visit hubby today, but just wasn't well enough to get out of the flat.  I'm feeling so low and miserable, missing hubby, it's so quiet here on my own especially when I'm not well.  This session of chemo was No.4 but it still,feels like there no light at the end of the tunnel yet and my body seems even more damaged, dry skin, sticky nose, almost all hair gone and what's left has turned silver, mouth dry and sore, I am in a bad way!  Not sure if I have a sore throat too, but it seems odd way down, will see how it is tomorrow and if no better, will phone my 24/7 helpline for advice.

As for the post surgery bras, I was fitted with a Nicola Jane one at the hospital, but after the op, it was too small, so that didn't quite work out as it should have and it was expensive.  I found the ones on eBay were cheaper and better, as was one from Asda.  Just be careful that ones from China are a lot smaller in size than ours, so go for a big size.  I am only 38A and had to get something like XXXL believe it or not.  Good luck with your next chemo and I hope you fare better than I am doing at the moment.

Regards, Giuliella.