Carolyn, hiyas and good luck tomorrow and Wednesday!
Remember the horror stories, especially online, are from people needing help and therefore the most likely to be posting and seen, this does hugely skewer the resultant seen affect of chemotherapy, I have spoken to loads of women now who haven't had any nasty side effects at all at cancer support centers etc and because of that haven't posted, so let's make sure we post even when there's nothing to post asking for help, if we post the positive as well it can only help.
Besides, I'm sure a lot of the side effects, especially in milder forms can just as easily be attributed to stress - I know I suffer tummy problems when stressed!
Looking forward to hearing that everything is going good and you wouldn't know you'd had it Carolyn!
i think we all just want to get started now.
pre assessment for me this afternoon and 1st chemo tomorrow afternoon.. not going to lie, I’m dreading it.. heard so many horror stories.
but we really have no choice, so need to get in with it and hope we come out the other side with as little damage as possible 🤞
good luck to all you lovely brave ladies. Xx
At present there are no children in my family, so Christmas shopping is easy!! 😁
We booked our Christmas day dinner in June for myself and hubby at the local miller and carter, booked and paid for so that's a nice easy day, and thankfully the chemo cycle should be at its best for us then too! New year's eve we simply go out the front with our neighbours and watch everyone else blow their money up in the sky for us whilst toasting with champers - usually have about 6 sets of neighbours out, but it's still a quiet affair even if I'm feeling a little out of it shouldn't be affected.
Can't wait to get it started on the 9th, just so I can get to June and find out what's next to be honest, so concentrating on one day at a time, being as prepared as possible and enjoying a little extra temporary freedom from work life (still regularly going to see my work colleagues, chat and keep up with the gossip!) .
Are you getting a line of some description put in livers?
You sound just like me - starting chemo 10th Dec following bi-lateral mastectomy on 30th Sept. - just spent the weekend doing the Christmas shopping and that’s the only thing sorted!
Dj43, it's funny, throughout my adult life I've had some weird illnesses - I had meningitis in my 30's, a parasite called giardia about four years later which isn't found in the UK at all, but in Australia and I'd never been abroad in my life at that point, up until then I had struggle with depression marked with psychotic episodes. Then I got into my forties and things changed - although I suffered the odd cold/tummy bug, nothing more, I was fighting my depression myself and able to come off all medication, in fact at the beginning of this year I was happily saying that I was my healthiest both physically and mentally that I have ever been as an adult!
Apart from the scars from the operation and nerve damage from lymph node removal so exercising my arm etc etc, I would still say I feel absolutely fine, I feel healthy and good about myself, even emotionally, whilst I have my bad days, I am coping with all this far better than I expected. I am able to ask the right questions of my team, I am not simply accepting what I'm being told, I am questioning my treatment and ensuring I know the reasoning behind it, the only part I am burying my head in the sand about is the idea of metastasis - whilst I know what they are saying and expecting, I refuse to let that hit me emotionally right now and to concentrate on what is 100% verified. I've asked them no to speculate with me now, I know what the blood markers are indicating, but as they've found nothing yet I'm prepared to ignore them for now and my team are doling my lead with this when talking to me.
I think part of this is making sure I am prepared for anything I can see immediately ahead of me - it's my way of taking control in a situation where I feel helplessly out of control. Even when I go on holiday, every day already has something planned and booked, I have a list if restaurants I want to try, I enrol in a holiday phrase course of the language, I search out locals who will take me away from the tourist scene, look for areas not accessible by public transport etc all before I've left home, I'm doing the same here.
Hopefully the results are the same, we've had a couple of amazing holidays abroad now (I figure if I'm gonna get the parasite I may as well visit the place! 😁) and both hubby and myself have felt my planning has ensured we've experienced a lot and enjoyed many activities. So... The chemo is going to run smoothly, the odd bump perhaps, but nothing that isn't easily remedied, I'm going to stay feeling healthy in myself, I'm going to have a lovely Christmas, I have plans for some nice long weekend trips next year which are not going to be affected by my chemo treatment, I am feeling positive and full of energy.
I'm having a port fitted on Thursday, first chemo on Monday next week, even that's gone my way, they thought I wouldn't be able to have a port, instead have a picc line with weekly flushes, I asked for a port, no having to go anyway for it to be flushed each week, no hanging wires on my arm, it's all implanted, very little evidence of it at all apart from when it's needed - I love my baths and using a cover would be such a nuisance - and they have got the machine in place from today to do them - yay!!!
So... Here's some positive hugging vibes if anyone feels the need...
🤗 🤗 🤗 🤗 🤗 🤗 😘
jeez fluffball, sounds like you're super prepared!! Go you!
I'm going to write a list tomorrow and start getting things ticked off this week. I've got some questions for oncology on Tuesday already written down, shame they can't answer the one we all want to know...will it definitely work??
Until 2 months ago I'd have described myself as healthy, I'm never Ill, barely even catch a cold. When I told my kids it was the first thing my son said, ' but how can you be the one with cancer you're always the one who never gets ill?'. So I'm really hoping that stands me in good stead for getting through chemo...wait to you see, bet I'm terrible at it!!
I'm going to our local cancer care charity place after my oncology appointment to get myself booked in for some support sessions and pampering treatments.
Good idea to get the skin and nails etc prepared so I'll get on that this week. I have quite dry skin already so I'll need to get moisturising.
I'm a nurse myself so I usually have the basics in in terms of medicines so I'll see how things go but will add some zovirax and corsodyl to the stock.
We'll get through it I'm sure...we've no choice really, it's the hand we've been dealt unfortunately. We can compared notes as well go. ♥️
I've known since September that I would be undergoing chenotherapy, I was almost put straight onto it, but they decided operation first as although there are indications of metastasis in my blood markers, they have found no evidence of any tumours on a CT scan, so decided operation, chemo and rads, then a full MRI to see what's what. Cross fingers it will be nothing found and scans every 3 months with endocrine/biophosphates, although they will never class me as "cured" there is every hope it will be lifelong remission!
This means I've had a LONG time to look at other people experiences and advice - first thing you need to do is realise that when someone reaches out on a forum such as this or indeed any support network, it is because something has gone wrong, when everything goes well you simply get on with your life and think nothing of it. I have spoken to so many people now who have simply sailed through their chemotherapy, who have had very few problems and the ones they've had have been easily solved - remember that when looking around..
So... I've had time to go overboard preparing, here's what I've done:
I have lots of different drinks in the house, different flavoured waters, sparkling water, cola, fruit juice, ice lolly sticks, hot chocolate, different teas - you need to be hydrated and so many people say their taste buds change dramatically, I'm trying to make sure that no matter what, I'll have something in I'll want to drink.
Moisturiser - I have chosen E45 but also have a small bottle of Aveeno in case I react (highly unlikely) to the E45, again, many say their skin gets very dry, easily irritated and tired - I have got myself into the habit of moisturising all over, getting my skin into the best condition I can beforehand and developing a habit before I start.
Medicine: whilst you can call the chemo line and get things prescribed if you do have a problem, it seems to me that being prepared for basics like headaches (remember most pain killers will also control temperature and therefore hide a key symptom for infections, so go careful with these, take your temperature before having anything that can help bring it down and record it for yourself), constipation, diarrhea, allergy medicine, a couple of tubes of zovirax for cold sores (the galpharm version is great as a preventative and cheap), a couple of boxes of canesten duo cream and a tube of germaloid cream - if you have these in you can take them as soon as it's ok'd by your team, rather than wait to go to a pharmacy to collect, they're cheap enough too, and make sure you get the prescription to replace. These are also things I tend to keep in anyway.
Mouth care - now I suffer anyway from mouth ulcers, so I reckon its gonna be a toughie for me - I have soft toothbrush, aloe Vera natural toothpaste (at a minimum avoid sodium lauryl sulphate or SLS!), alcohol free corsodyl mouthwash, baking soda and salt (mix into water and use as a natural mouthwash), difflam (expensive, but worth perhaps paying for one initially as its a godsend and you can get it on prescription, but I've been told not until I get the problem (huh?)), get a free sample of something called gelclair from their site - ultra expensive but if your mouth ever becomes a real mess and you can say it's helped you MAY get it on prescription (depends whether your docs will allow the expense), have some bonjela adult and some oragel too in the house. For me pineapple works well too, having it frozen is nice if my mouth is sore, but do check that it doesn't do the opposite as for my sister it is one of those things which triggers mouth ulcers, so don't try this whilst you have them, check beforehand, if good, lots of pineapple juice too...
Dried fruit - prunes/apricots/dates are especially good for energy and helping the digestive system, I also like them which is a bonus!
Anti-nausea - sea-band, ginger biscuits (the higher the ginger the better, try Borders old fashioned ginger biscuits, or M&S ginger stem cookies), aromatherapy rubs - there is a lot out there, look for stuff that is safe and advised for pregnancy sickness and you're good for this.
Hair - I suffer bouts of alopecia anyway, so I've used this as an excuse to splash out on some new headwear and a couple of extra wigs - personally I love buffs - versatile, lots of colours and if you go for the polar ones at this time of year, cosy and warm, but there are some excellent headwear companies that work with women with alopecia, no matter the cause and it is worth experimenting with scarves/beanie hats/slouchies/soft caps - it is probably worth getting a really soft sleep cap as your scalp is likely to be a little tender and certainly cold.
A soft blanket - for sheer comfort, when you need that little bit of extra cosseting, don't ever worry about saying stuff it and cuddling up with a nice soft blanket and a good book or film and ignoring the world for a short while! Add a nice soft pillow too, perhaps one to take to chemo with you, for that added comfort factor.
Fluffy socks, gloves, scarves, hats for warmth - it's winter and many report that their extremities feel the cold, so nice warm pj's too...
I have treated myself to a little extra make up, I have also renewed my eyebrow make up - I've never been bothered losing my eyebrows, so a very simple easy to use solution I like is a Christian Faye eyebrow kit with stencils, but there are kits which with a little patience you can draw very realistic eyebrows. I've also treated myself to some nice lip colours, a nice blending pallete and some nice earrings (draw attention away from the eyes and eyebrows). Never tried the fake lashes, but be warned if your lashes go, you do tend to tear up and "cry" a lot!
Hand wash - at every sink, a fresh hand wash, have hand sanitiser too, for all your family, get into the habit of using them.
Hand moisturiser - I'm using vaseline hand and nail, and trying to strengthen my nails, many recommend dark nail varnish, personally I'm not going to bother with that and will simply ensure I'm wearing gloves when out with plenty of moisturiser and cotton gloves if needed inside as it's the UV light which damages your nails most, but be aware that's not the whole story and you need to also look after your feet. I've been to a chiropodist and have a general foot massage/MOT to ensure my feet are as healthy as can be going into this.
Lots of tissues, nice soft toilet paper and washlet toilet wipes, a pack or so with witch hazel for piles, lush bathroom products which are hypo sensitive for indulgence moments are completing my kit..
Yup, I've gone totally overboard - I'm reckoning on not needing most, if any of it - but its all stuff that isn't going to go out of date immediately, will get used at some point anyway and if needed will hopefully make my life easier as quickly as possible...
One thing I have repeatedly been told is to keep a record of how it goes, tell your team everything, don't take anything until its been ok'd by them, keep a record of everything you take tok and how quickly it's been effective. Often things can then be done on the next cycles before they happen...
See... Told you I had way too much time to think about this!!! 😁
Mc22 this is the chemo thread you should join ❤️ I just used maybelline color show blackout black nail polish ❤️ Also used washing up gloves when washing pots too and when doing the cleaning. Hope this helps 💕💕✨✨Shi xx
I'm the very same, had my surgery already and was totally focused on that, now I have my oncology appointment on Tues and probably chemo the following week and I'm really under prepared. I see other ladies have already sorted out wigs and hats and researched side effects and I've spent the weekend so far Christmas shopping and celebrating my positive results on Friday! I really need to get my finger out and write a list I think!
I'm due to start chemo this month too. I have my oncologist appointment on Tues 3rd and they've said I'll probably start the following week.
I have already had my wide excision and pleased to say my results from that in Friday were clear margins and clear lymph nodes. Unfortunately it is triple negative metaplastic though so grade 3 and particularly aggressive for recurrence, hence the chemo and radiotherapy. But it's low stage so I'm focusing on that.
I'm nervous about chemo but will do whatever it takes to make sure this doesn't come back!
I more than happy for any advice or tips on managing the side effects as I really want to try to be as normal as possible for my 13 yr old daughter through this so she doesn't get too scared if the situation.
I'm so glad there is a specific thread with other ladies going through this at the same time, will be nice to feel I have some company. 😊
Good to hear emotions and recovery are doing well. Will they start chemo or wait till pneumonia is clear? How is the reconstruction I’m still not sure to have it or just be flat. I had my pre treatment meet yesterday but they can’t give me a start date till next week. Busy while waiting around!
I choose to have a diep reconstruction and my surgeon made me really aware of the risk of the pneumonia. I didn't stop smoking until I got my dx so had only stopped for 5 weeks prior to surgery which was a massive reason why I got it.
The operation itself I remember not a thing but the emotions and my recovery is going really well and I am a real pain diva.
I think my chemo planning appointment on Monday is going to be cancelled because my hospital is having a strike so hopefully I will hear on Tuesday what day I can go over and get more information.
I've had a mastectomy and auxiliary node clearance, finally getting a diagnosis of T4 N2 MX, grade 2, ER+, HER2- followed by a load of stats and numbers and icky bits that I really don't want to know about - every time I go it seems they just bombard me with more "now it may be a little worse than we hoped..." and I've had enough of that and told them to just tell me what they want me to do and I'll argue each traatment as we go!
Chemotherapy I have been reluctant about, mostly due to a family history of heart problems but also due to my treatment at A&E after my mastectomy when I ended up needlessly running a huge infection which should never have got that far of they'd listened to me in the first place! (rant over!)
However, I have been convinced that my prognosis really isn't particularly fantastic and that chemotherapy is more or less essential... So... 9th December here I come!
Considering I have asked every question going about the treatment and insisted on every reassurance possible, insisted also on extra tests for my heart that normally they wouldn't have done, I'm now actually feeling pretty much prepared and ready for this..
Initially I'm to have 8 EC-T, with a variety of accompanying tablets to start at various stages and a warning that they may well be advising me to have regular chemo sessions for life and that even if I don't now it's likely to be the case at some point.
Right now though, so much is unknown, I'm just taking every day as it comes and preparing for the worst but believing in the best - I reckon the 8 EC-T followed by 20 rads and then whatever cocktail of endocrine/biophosphates will be enough for the foreseeable future and I intend to be back at work by the summer holidays! 😁
So... Let's go!
I've got my mastectomy in 3 months but chemo first so we’ll be on this bit together. You’ve got the operation over and done which is great. Stay in touch. All the best x
at lease you’ve already had your surgery, how was it all?
we’ll all get through this chemo together, one step at a time x
Hello there....I am going on Monday for my oncologists meeting but don't know a date I will be starting my chemo.
I had my surgery 8 days ago in the Belfast City Hospital to remove a 5cm ILC tumour, all my lymph nodes and a diep reconstruction. I picked up pneumonia which was pretty nasty but I'm hoping I improve enough for my appointment on Monday.
I know that I am ER positive and HER2 positive.
I've spent so much time worrying about the operation and my dx that I am only starting to think about chemo now! x
Not a problem, I will be interested to hear if you decide to go with the cold cap and how you find it. There is a lot of advice on here about hair care - what products to use etc. What I have found is that the hair that I kept and that which is now growing is very fine and fragile so you have to be so careful with it. Try not to fiddle with it too much is my advice! Also, I have a silk pillow case which I think has helped as its less stressful on your hair.
Good luck - you will be fine I am sure. xx
sooooo many appointments! My car knows it’s own way to the hospital now 😂😂
my pre assessment is on Monday x
love that you’ve worked out the 2nd treatment date. Just managing to get my head around this roller coaster of appointments. I researched online and found out chemo drugs have some plant based elements. This pleased me as I thought it was pure chemicals. Wow the hat with hair attached must check it out.
nice to meet someone who starts the same time as me. We can maybe keep in touch and discuss progress/ symptoms.
youre right, I’ve met people who have found it ok, as well as people with horror stories, so will just have to wait and see.
my bc nurse and consultant have been fab too.
i have also bought a wig,and a hat with hair attached and a halo wig from a great website I found called headscarves by ciara. Check it out.. there’s some really nice stuff on there and the hair looks really natural... I’m just getting prepared as I really don’t want to have to walk around with a bald head.. lol. I have worked out that 21 days from our first session will be Xmas eve, when our 2nd one Is due.. never mind eh!!
I start Fec-T chemo on 3rd December and yes feeling anxious but at the same time want to start ASAP. Feel reassured by my bc nurse and my consultant is great. I’ve decided to have the cold cap also bought a wig from wish.com just to try it out in case I do need to use it.
Dreading bad side effects also met a lady whose had hardly any side effects. So will see.
Trying not to worry when awake but worry bubbles up in the night time so put on the tv to distract me. It works well to take my mind off.
Got a pre treatment meeting on Friday. Will post updates.
All the best.
Hi Carolyn, try not to worry too much about side effects early on. Early reactions are quite rare. Most people develop side effects from the cumulative effect so they don’t start kicking in until you’re further along. I hope that puts your mind at rest a bit. I think the build up to the first chemo session is worse than the actual chemo! Xx
Hi Carolyn, I know it’s very daunting but if I can get through it you can.
First, the cold cap - for the FEC bit I guess about 2.5 - 3 hours as the cold cap has to be fitted which takes 10 mins or so - the care assistants are the experts on our unit and they come along and sort it out. While that’s done the nurses put the line in for the drugs and do all their bits. The actual admin of drugs takes about 20 - 30 mins between the pre and post cold cap times. For the T the admin of drugs takes an hour so although the cold cap time is less so it works out about the same. I have never had a headache with it and to be honest don’t find it an issue at all. Everyone is different so worth trying.
I had a rocky start and ended up in hospital on my first cycle with febrile neutropenia (don’t let that worry you, it happens) and have been on a reduced dose since. Main issue for me has been nausea which finally on the last cycle I managed to keep under control. Worse on FEC than T, but they will give you medication to manage symptoms so don’t worry. I am pleased I have nearly finished and before you know it you will have too. You will find the support on here that you need and lots of advice which is helpful. xxx
Hi Carolyn, I was an April 19 starter, also fec t like you. I didn't cold cap, I am prone to migraine and thought it might bring one on. I have nice wig for occasional use but hair growing back now. I found chemo scary too, but we get through it. I did get sick with the first one, but just take all the anti sickness pills you need, the nurses were lovely and I was well cared for. We are all different for side effects. You'll soon be counting off the days to the finish, rather than to the start, and that's a good feeling. Good luck Mo x
Thank you wolvesgirl, that’s a great help.
how long were you there in total then with the added cold cap time?
and did it give you a really bad headache? Do the nurses put the cap on for you?
What symptoms have you had throughout chemo?
sorry for all the questions. Glad you are nearly at the end of your course.. starting is very daunting x
I am on the August 2019 group - I have had 5 out of 6 FEC-T cycles and have cold capped for all. I did lose a fair amount of my hair but I am really glad that I tried it - I certainly didnt lose it all. It is now growing back pretty quickly even though I have not finished but its thin and fine compared to being thick and coarse as it was before. I am sure it will find its way back to its original state eventually! My advice, give it a go - you have nothing to lose. Its not that bad, just makes you feel cold, but the unit will keep you comfortable. The worst thing is that for the FEC bit, you have to have cold cap for 30 minutes before treatment and 90 mins after but for the T bit, its 30 before and 20 after (although the treatment takes a little longer) but to me that was a small price to pay. Good luck!! Wolvesgirl xx
Hi, I’m Carolyn.. I’m 44 and start my chemo on 3 Dec, am really nervous!!
Saw my oncologist yesterday and the side effects are scaring me to hell.
i start Fec-t, 6 rounds, every 3 weeks.
I have idc grade 2, 5cm, 1 lymph node involved, her2 neg.
starting with chemo to hopefully shrink tumour prior to surgery.
wondering whether to try cold cap as my bcn said it’s unlikely to work. X
This thread is for anyone due to start chemotherapy in December 2019. 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.
Here is the BCC guide on chemo:
I finished my chemo over a year ago 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.blogspot.com/p/chemotherapy.html
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.
Best wishes xx