Yes what you're feeling is all perfectly normal. I don't think I bothered getting dressed for a few days!! It was just too much of an effort. Take it easy for a few days and you're gradually feel back to your self.
Treatment yesterday was ok, lovely nurse talked me through each drug as it went in and explained, extremely accurately, how I would feel! Steroid kept me on a high until 8pm when my head started aching. Went to bed early but didn't sleep very well. Good to know that's normal 😊
Feeling a bit weird today, again good to know I'm not alone, but haven't actually felt sick which was my main concern, so I'm pleased the drugs are working. Trying to be kind to myself, and taking it easy. Can't remember the last time I wasn't dressed by midday, but got a good excuse now!
I've read elsewhere that someone refers to this journey as a triathlon, which in my case is chemo, surgery, radio. I like the analogy and that it's a reflection of the different stages. Each one bloody awful and hard work in their own way. We will all deserve a medal at the end 👍
Hope everyone else is managing ok, and getting the support they need. Thank you for all your posts, it is hugely reassuring. Xx
Hi Fairy and welcome to the thread. There are quite a few ladies on here that have now started chemo and I hope you can all support each other through it. Please ask if you have any concerns or worries.
I hope everyone is fine today?
Butterfly how are doing after yesterday?
Good luck to Sue and Helen today. You will be fine x
And welcome Claire. We hope to support you along the way. I had that same reaction to the drugs. It did improve during each cycle. Also, I found it difficult to sleep for few days, but that's the steroids, so that will improve in a day or two. Keep taking the anti sickness as well for a few days and that will also improve.
Do you have any help with the children this week? You may need it!!
Shopping done, washing done, collected bits and pieces together that I might want by me. Taken first anti nausea pill, so it's feeling real now! Not long until I leave, will let you know how it goes. Xx
That's great Helen. So pleased you feel more confident with the wigs. And you sound quite positive too.
Good to get organised as you may need to take things easy for a few days. Stock up the food cupboards ( including chocolate! although strangely I had a craving for sausage sandwiches!!) and sort out the washing. Then sit back and let others look after you.
Best of luck for tomorrow.
Am overwhelmed with the supportive and helpful comments on here, thanks all.
Well I went kicking and screaming to my wig appointment yesterday with my best friend and hubby, ready to cry throughout. It was fantastic! Heather, the consultant wears wigs for 'fun' so it was a great icebreaker when she showed me proof that it was indeed a wig! I was totally at ease and genuinely feel the wig I've chosen is a great match to my actual style and colour and can really see myself using it whereas yesterday I thought I'd buy one and leave it in the box...so much so that I'm considering not bothering with the cold cap tomorrow. I really didn't expect it to be a pleasant experience but I feel totally different about wearing a wig now, before yesterday I was only looking at headscarves. I took some scarves with me and the ladies showed me how to tie them so that was really useful too.
Well Sue58, we dive into the chemo together tomorrow then. Today I made a list for my 'chemo rescue kit' so am making a trip to Boots is this afternoon so that I've got everything I need to make things easier. There'll be plenty of room for chocolate in the box too!
Good luck Sue58, speak tomorrow.
Hope you're all doing OK?
Best of luck to Butterfly today. I'm sure you will be fine and let us know how you get on.
Sib - I hope your mouth is getting easier now, that sounds uncomfortable but looks like you've had some good advice.
Ali - I hope you're going on OK and are feeling well after resting. I'm doing OK, I keep feeling like I've got lots more energy and then the fatigue hits you. You just have to go with it, don't you? Most of my nausea has gone now but I’m still quite fuzzy and headachy. I’ve been able to do a couple of short walks and it’s good to get out in the fresh air for a bit. And I’ve manged my daily injections now, although they did say you don’t have to if you don’t want to – I just didn’t want the tie of the District Nurses coming in every day.
Well done Ali for choosing your wig - it's a hard decision, isn't it? I found going for my wig-fitting quite overwhelming with over 200 wigs there, some very scary! Decided in the end with mine to stay longish and blond as I am now, need to feel sort of similar to how I am now. At least it's one thing I can still be in control of... Also decided to have all my own hair cut off soon which’ll be hard to do, but I'm sure it'll be more manageable than having long hair falling out – and even though I'm trying the cold cap I'm sure I'll still lose a fair amount.
Hello Helenp, Butterfly, Soworridl and Sue58 - I hope we can all support and help each other along the way as we all go through this right now. This time last week I found the thought of starting chemotheraphy very surreal and daunting but the reality, so far for me anyway, hasn't been as bad as I thought - although it's still early days as I only had my first treatment on Saturday. It’s the fear of the unknown that’s hard. I left the hospital afterwards much calmer than I had gone in, knowing I’d got through the first session and with more of an idea what to expect next time. The Chemo nurses are so reassuring and experienced and they help you cope with it all.
I hope your treatment has gone OK today Soworridl. And good luck for Thursday, Butterfly and Helenp and Sue58 for Friday. Let us know how it goes for you all.
Hope the cold cap goes OK, Helenp – I found it bearable after I got through the first half hour, but was pleased I took in a fleece blanket to wrap up in as the rest of your body feels so cold as well…
Hi Sowirrid, I had EC too. It is very worrying when you don't know much about it. I found the procedure itself painless. The nurses were very kind and very experienced . I had excellent anti nausea medicine called Emend, and would definitely recommend that. The steroids get you a bit hyper, but don't last for long. The side effects vary. I didn't like being so sleepy all the time, and there is a chemical fuzziness similar to being drunk, but who hasn't been drunk? The plus side is I got out of all housework! I know it's hard, but what is the alternatives? I've got four beautiful grandchildren and I want to see them grow up if I can. You will be very well looked after with loads of medicine to help you cope . I'm wishing you all the very best. 🍀 X
Hi butterfly and also welcome!
I hope we can all help and support each other along the way.
Hair loss is definitely a difficult side effect, that's for sure. Preparation does help, whether that's organising a wig, buying scarves or getting hair cut short. Take control as much as possible. I know everyone says this, but it will grow back. I opted for scarves, and after 4 months of completing chemo, I was able to throw those scarves away!
Good luck for Thursday and , again, I'll try and help where I can.
Hi Helen and welcome to the forum.
I hope that I, and the ladies on here, can help and support you as much as possible.
I'm sorry that I don't have any knowledge on triple negative BC, but there is a thread on here that specifically deals with that.
The thought of chemo is far worse than reality. You will be able to do this, just cope with one day at a time.
Hair loss starts about 3 weeks after chemo begins. I had various scarves ( wigs just weren't for me) which are a good idea just because they can contain the mess!
In terms of finances, I think Macmillan are really good with that, so take a look on their website. Again, there is a thread specifically on here that deals with that.
Best wishes for Friday and please ask if you have any other questions .
Hi ladies, I too am starting this week, doctor tomorrow, 1st chemo Thursday. It's all getting a bit close now!
I have 4 rounds of EC then 4 rounds of Docetaxel with Trastuzumab and Pertuzumab, before surgery and radiotherapy. ER, PR, HER2 positive hence the long list of drugs.
Had to cancel a trip to NY sadly, but I'll get there again once all this is over.
I too was sceptical about a wig, and decided I would just stay indoors for the duration, but have to admit I was pleasantly surprised on Monday once I had had my appointment. Some looked awful 😂 but there was one that actually didn't look too bad. It's weird because we don't spend all our time looking at ourselves in the mirror, it's more how others will view us and so I took my mum for support which really helped. Making the decision to order one, made me feel so much better last night, that I had taken control of a situation that has been completely out of my control so far.
Thank you all for sharing your stories, it's great to know I'm not doing this on my own.
Hi there August ladies, this is my first post and having spent half an hour reading your posts I'm already feeling less anxious, so thank you!
Am starting FEC chemo on Friday, and am seeing my oncologist tomorrow for bloods beforehand. Had a lumpectomy in June with no nodes involved. I have triple negattive BC, found during a routine mammogram as I'm 50m this year and was sent an appointment to attend the Breast Test Wales clinic - thank goodness for routine screening eh?! They told me only 70% of women attend their appointments, thank goodness I did!
I got to go on hols before treatment starts and got back on Sunday, and boy has the reality hit me since then. Have been in tears for two days on and off. Have a wig appointment tomorrow even though I don't think I'll want to be seen wearing it, hubby has been amazing and is convinced I'll feel differently when I see how good they are, here's hoping.
Am pretty down about it all really, I'm a primary school teacher and when diagnosed was in the middle of job interviews for September as my current position was ending in July. Now I find myself without a job. Such bad timing!! Does anyone know if I can claim some kind of sick benefit for the duration of my treatment? I prob won't be able to look for work until after radiotherapy in January/February.
It's great to be part of this forum, you're such a supportive bunch. xx
You will feel tired for the first week so take it slowly. You are already doing far more than I achieved.... I didn't leave the house for a week!
I found once I'd finished those injections, I was ready to get back to normal xx
Hi Sib, dipping in from May thread. I avoided mouth ulcers and oral thrush , and I think it was because I took 1 teaspoon Manuka honey every day. I used 15+ and over which isn't cheap! My dentist advised me to use a child's toothbrush as they are softer, and I used aloe Vera toothpaste. She also had no objection to me continuing to use Corsydyl mouthwash so long as I didn't have ulcers. You might have already tried these?
Re gsf injections, I'm a real wuss with needles, and when I tried to do my own apparently I nearly passed out! The community nurses were great and came every day, but it is tying as they didn't come until lunchtime. The hospital organised the CN as they wanted to be sure it was administered properly and all the gunk went in. I admire anyone doing their own. My CN advised walking to combat the niggly pains after the injection, and it did work for me. X
Also re. injections....you can ask the community nurse to do them for you ( although mine were not very keen! ) or if you are able, the nurses at your surgery will be able to help.
Sib , I found the nasty taste in mouth only lasted a few days. So hopefully this will go very soon.
My first Chemo on Saturday went well thanks. 1 EC-T down, 5 more to go! Just so glad to get the first one out of the way and have a better idea what to expect the next time. The Chemo nurses were brilliant and so reassuring. I managed to tolerate the cold cap OK, even though it was -3 degrees, my head seemed to go numb after a time! No idea if it'll have any effect though and it does add a couple of hours to the treatment.
Had a bit of a rough time since, quite nauseous, dizzy and headachy - I've just been resting and taking it very easily, taking all the anti-sickness drugs and drinking plenty of water. Felt much better today, fuzzy as you described it, Sib and Ali. A bit of surprise about the daily white blood cells injections, had the District Nurse out yesterday to teach me and eventually mastered it - another little hurdle to overcome in this new world we've found ourselves in.
Sib and Ali, you both sound like you're doing really well, hope that's continuing today. Can't believe you're both up and about, well done! You've spurred me on to hopefully do that tomorrow! It's really good to talk to other people who are going through this at the same time, so we can support each other, although I'm sure we'll all have some differences along the way...
And thanks Sue, for all your supportive and helpful comments, really appreciate them. Good luck to the other ladies on the August thread who may be starting Chemo soon. xx
That's great Sib! Sounds like you're back to normal. Hopefully you will now be fine until the next cycle. Xx