Hello lovely ladies, I survived the first chemo!! It wasn't easy I was completely wiped out with extreme nausea a cross between morning sickness, travel and sea sickness for 5 days. I had Emend and lots of other tablets but for a while nothing really helped. The steroids gave me horrible nightmares as well as a puffy bright red face. It was not a pretty sight! I had not expected to feel quite so poorly, the chemo nurse rang every day with suggestions to tweak my meds and says next time will be easier. I can see that some of you have also had a rough time, we will get through this, together we are stronger. Now on day 10, my appetite has returned although everything tastes sweet not bitter, energy levels better than they were and I have even ventured out to the supermarket armed with my anti bacterial hand gel. The sun has been shining it's good to be alive😀 I cold capped during my chemo but am not sure whether or not to continue, my hair feels like straw and as I am trying not to wash it so often it feels horrible on my head. I figure if it thins out I will still want to cover it up with a hat or scarf, what do you ladies plan to do? The week before my chemo I had a wig consultation at a lovely salon which has a whole section devoted to hairloss and wigs. They spent time discussing the reasons for my hairloss and had lots of practical suggestions. My sister came with me and I thought I would be upset but in fact I enjoyed every minute of trying on all the lovely styles and colours. I decided to stick with my usual style so that even if I didn't feel like myself I would at least look more like myself (if that makes sense?). The hairdresser suggested I have a slightly lighter shade as my complexion is likely to get a bit paler during my treatment. I was even given instructions on how to care for it! Now it is ready when I need it and it's something I am in control of. I hope you all have a good day today,
I think everyone is different in how they prepare, but like you, I wanted to do everything & know everything I could in advance. I'm a great believer in knowledge is power and preparation alleviates anxiety - at least that's true for me. If nothing else, it kept me busy!
So, this is my list, hope it helps:
I'm sure there are other things but I can't remember them now! Hope that's all useful. I'm sure others can add their suggestions. However, it's worth adding, that this was just the way I prepared. For many, it will be equally helpful to do nothing and take everything as it comes. I am not saying this is the right way, just the way that helped me. So do what works for you. And ask questions anytime. Someone will be along sooner or later.
Good luck and glad you found us,
Buster1 I'm thinking of you and hoping you get out of hospital today. Sending lots of hugs xxx Had a very tired day yesterday, I keep waking up at 5am, but had an uninterupted sleep last night, so not too bad today - so far. Hope everyone has a good Sunday xxx
Still nauseous here but it does seem to be improving - phew! Very tired and doing virtually nothing. I'm eating little & often but am not sure if that's a general apetite thing or a managing nausea thing. My mouth & throat were very sore earlier but have since totally recovered. I slept all this afternoon as well as all night and am so very grateful I am not struggling with sleep.
Hoping day 4 brings more improvement on the nausea front.
So sorry you're in this position too. Bit of a crap club to belong too but I'm glad you're finding it helpful 'being' with others - I know I do.
When you get your start date, I'm sure there'll be a July group if it doesn't happen till then. But do stick around, it's always good to hear from people.
Hi everyone, I'm so glad to be able to read all these messages. I'm going to be seeing the oncologist soon. I had 6 / 15 positive nodes after my axilary clearance and lumpectomy on 3rd June. It has been so informative to read about what I should expect to go through. Diana.
This is dreadful! Can you get the staff to contact the catering manager? Because it is totally unacceptable not to have a special diet provided for. Or ask for a referral to a dietician. There'll be one and as a cancer patient you're perfectly entitled to see one.
In the meantime, is it possible for your family to bring in supplies for you? Soup/stews in flasks? Sandwiches, nibbly bits? Anything you might fancy to keep you going?
And I'm so sorry you're having such a rough time. Don't feel you have to be strong for everyone else. Just be yourself. Let them carry you for a bit, they're probably all desperate to help. Let them love and cherish you.
Hi Buster1. Sorry you are having such a difficult time. I can't believe the hospital doesn't cater for vegetarians. How hard is it to make a nice jacket potato or even a nice chunky veg soup. You need to build your strength up and that won't happen on cheese and crackers.
I hope you get your white cells sorted and the hickman line so you can get home soon.
Sending you hugs and prayers..
Hi Ladies, hope everyone is doing OK after your treatments.
Belle, I had really sore mouth too, at one point it felt like my tongue was swollen (it wasnt but felt really strange) getting better now, I found a taste for strawberry milkshakes and they definately helped and Ic e cream and Jelly. Feel like im a child again.
Had my mid way check up today, bloods only slightly down so that good, the injedtions they gave me to boost my immune system must have worked.
I had a bit of a scare this morning, woke up at 2 am with really bad achy pains in my lower back and groin and shoulders, took some pain killers and it seemed to ease but was a bit worried, been told it is normal side effects of both the chemo and the injetions they have given me, and also my kidneys may be irritated and to drink more, this was a side effect I didnt know about it.
My 2nd treament is booked in for the 22nd June. Just starting to feel human and its going to start all over again.
Keep strong everyone.
Not feeling too bad, had an early night, woke up about 5:30am then dozed for a bit...Managed to get up with the kids and do the normal routine, which was great because the younger ones have been pretty upset the past couple of days . At the moment I would compare how I feel to the first trimester of pregancy, tired, a bit icky...Got out for a walk with my husband this morning too, but had to lie down when I got back! Just relaxing now and hoping for the best. My husband got me some mouthwash for dry mouth, which I use after every meal think its called Biotene and there's a gel also, which I haven't tried yet, as my mouth feels ok. Wishing all of you the best and lots of hugs xx
May be a good idea to keep an eye on your mouth - symptoms seem familiar to me - the moment you see white spots, you ought to go to your GP. It could be Mucositis, which I suffered from and I am watching out for now. I got antibiotics prescribed, which did the trick.
Sorry to hear about the liquid exit, lol - for me it is the opposite - again....
You certainly got more sleep than me, lol - mind you the steroids are keeping me going, lol.
Ginger beer LOVELEY! - you might also wish to try some of the Rochester Ginger drinks - massive choice and with the Dickensian range you can make a wonderful array of 'cocktails' or teas. And they have proper Ginger root in them and are organic/vegan - Have a look on Facebook for Rochester Drinks - all on there - https://www.facebook.com/RochesterGingerholics/
Products can be bought in Holland and Barratt and some of the others on line.
For me - a live saver, lol
Hope your SEs get better soon.
How are people this morning?
I had a rough afternoon/evening. Didn't actually throw up but was horribly nauseous. Also diarrhoea, aches and feeling cold. Didn't have too bad a night, slept till 1ish, dozed till 3 - discovered ginger beer at this point and oh my, it is sooo good! Then got another 4 hours so pretty good all things considered. My tongue is very tingly and mouth is constantly dry so I'm drinking plenty. Still got diarrhoea (lovely!) but the nausea isn't so bad. Planning a day of dvd watching I think.
What a tough time you've been having, I'm so sorry to hear this. Hope your treatment doesn't throw up too much for you to contend with. Have you looked at the forums for others in your situation? You might find those helpful too: https://forum.breastcancercare.org.uk/t5/I-have-secondary-breast-cancer/ct-p/secondary_breast_cancer but you are obviously very welcome here.
Hi, when I had a check up in July and it was obvious that the tumours where growing again my onc said if I was feeling well and enjoying a good quality of life I could delay further treatment for a time. Not an easy decision to make but a ct scan in August showed only slow growth so as I was working full time and felt good I went for that option. Things have gone slightly downhill in the last few months with the Lymphoedema- caused by tumour in armpit getting worse and the appearance of skin mets so back to chemo. First treatment yesterday went well and ok today, just waiting to see what side effects I'll get this time.
Millasmummy and Belle, glad you're home and doing well...Mine went well too, have a slightly fuzzy head and plenty of sickness medication. But feel fine and glad to have the first one out of the way xx
Nice to hear from you Millasmummy 🙂
Me too. Got home about 20mins ago. Took about 31/2 hrs because the Emend had to be given an hour before the chemo started and also because today was the day of the new pumps in the unit so they were all going bonkers as inevitably they didn't work like the old ones! I felt very sorry for the staff - it was going to be a long day there.
My take home goodies are: Emend (anti sickness); Dexamethasone (steroids); Cyclizine (more anti sickness); Domperidone (even more anti sickness!); Difflam mouth wash.
I've already drunk 2 litres and done a 'clense & detox' juice today so apart from the constant trips to the loo, I hope I'm helping the toxins out of my system while wishing them well in their quest to nuke any rogue cancers still lurking.
Generally feeling ok so far but already muddled headed (doesn't bode well!) and my mouth is tacky.
Thinking about all of you that are having your first session tomorrow.
Its not nice but a means to an end. Ive had my up and down days since my first session on the 1st June and admit that I have struggled but sharing on here and reading everyone elses posts have helped me along as I know that it is not just me. I slept on and off for nearly 3 days from Saturday but have now managed 2 days back at work and feeling better all the time. Its an uphill struggle believe we can all make it with a little bit of support.
Take each day as it comes and listen to your bodies. See you on the other side.
Just think of us as the three muscateers, Kalimera: you, me & Millasmummy 😄
I'm heading bedwards now, lack of sleep is telling on me. And I just know that's going to get worse! See you on the other side.
I am starting tomorrow too, I thought it was today, but just blood tests. Feeling pretty anxious this evening, the Gin is an excellent idea Belle! I might have to borrow that one. Well we'll see what happens tomorrow then...Good luck ladies xx
Hi Foxy2104 and Charissecarson,
Top tip re eating! Will definitely try to remember that. First one tomorrow. Just packed a bag of bits to take with me: water (I drink like a fish); herbal tea bags (don't drink normal tea); sweets to suck; book; headphones; lipbalm etc. Just about to update my phone with some listening material. I've raided the the BBC iplayer app for downloadable dramas.
As a treat to look forward to, I've bought a bottle of Stratford Gin (bit of a gin fiend!) which is going to sit on my dresser until after this is all over and I'm well enough to crack it open! Looks pretty, doesn't it? 😄
Moved from anxious to Bring it On. The sooner it starts, the sooner it'll be over.
I know Millamummy is joining me in starting tomorrow - anyone else?
Hiya Foxy 2104,
Just popping in from the May starters. Just to say that your experiences sound very similar to mine after my first FEC. Listen to your body and rest as much as possible. Everyone seems to react differently.
Following my FECs I have been prescribed dexamethasone, a steroid, I think it is to counteract the nausea but I find a side effect is it keeps me awake at night, which is rubbish when you know you need to rest and sleep! For nausea and sickness I also have onandestron to take regularly and metoclopromide to take when needed (before meals in my case). if they haven't prescribed metoclopromide it might be worth asking for some just to help you get through.
Because I couldn't eat after the first cycle I became very weak because I lost a lot of weight and was prescribed Emend for the second cycle which was a few days ago. I believe they only tend to prescribe these if you have a bad experience the first time round. I have found it has helped. I have kept my appetite and not been sick once so far this time around. It might be worth asking for this next time.
Hope you manage with getting the children ready for school xx
There's also the Look Good Feel Better days. I've booked into one although not until 1st August. I believe they teach you things like how to cope with eyebrows.
there are a number of things you can do. You could order some "eye brow wigs" I found some on Amazon. Although not tried yet, as they are still there at the moment. Or you could use Eyelure eyebrow stencils and a good eyebrow pencil and eyebrow shadow. Superdrug has quite a selection of stuff. However I found that the templates were too large and made my own. Off to Hobbycraft to get some acetate sheets - cut them into a rectangle a little larger than my brow area. Then stuck them on with tape - and drew the shape of my eyebrows with a permanent small tipped marker. Once done cut the coloured area out very carefully with a scalpel - and hey presto - my own customised eye brow stencil!
I came late to the eyebrow tattooing too, Millasmummy. I spent much of Sunday googling to see if it was too late and the conclusion I came to was the same as the advice Buster's given.
I've just got back from the hairdresser's where I've gone for a really short crop. They were so lovely. I've been going to them for a couple of years so not long really, but they refused to charge me for this one as they know it's a pre chemo crop. Aren't people kind? I nearly cried.
I'm having trouble sleeping again. It's taking ages to drop off and when I do my dreams are filled with chaotic chemo units and horrific side effects. Clearly I'm more stressed than I like to admit.
Enjoying my last day at work before starting steroids tomorrow, visiting the lymphoedema clinic and then hospital for medical photos and blood test ahead of my first dose of docetaxel on Thursday. Finished my epirubicin chemo in Jan last year so have had a good run without treatment but lymphoedema is pretty bad now so hope the treatment will improve that. All the best to everyone else starting chemo this week.