It is great that you are making the most of your good week, AliOG. I am so looking forward to that next week. It is important to enjoy the good days!
Have a lovely day ladies.
Thanks for sharing your experience, ilovemarsbars. It's really helpful to know what to look out for. I'm now into my "well week" before hitting chemo round 2 next Monday. Went away for the weekend and did normal things like have a meal out, go for a long walk, drink a glass of wine! Felt amazing and recharged my batteries significantly. Going to keep fingers crossed for round 2 that this is a pattern. Oh, but a filling did fall out during the weekend so I've got to check to see if I'm allowed to get it fixed.
Hope everyone is doing ok this week xx
I am having day 6 slump post 2nd chemo. Also sad to see hair disappearing this morning. I will give up on ice cap for third cycle which will at least reduce time in the suite. Have to wait till Friday for wig so will wear scarves till then.
Hope everyone else is feeling good and doing well.
Hugs to all.
Sorry to all of you going through a hard time right now.
I am on day 4 post 2nd chemo and have felt a bit rough for the past 2 days. Injections started today so may get extra side effects. Nausea a bit reduced though.
Hair still falling out but not all gone yet. Have to wait a week for wig so have turban on today.
Hugs to all and stay strong.
Sorry to hear you've had a rough time, Ilovemarsbars. That sounds like a real ordeal. Can you share with us how you knew you'd got it so we can watch out for the signs? I really hope you feel better now and can get back to the schedule before too long.
Im on Day 12 post first treatment and I'm just starting to feel human again. I'm having coffee with a friend and a weekend away with my husband in our camper van. Can't wait to get away from these four walls! It's been a real rollercoaster so far but I'm hoping forewarned is forearmed for the next bout. Hope everyone else is ok. Still hanging onto the hair here at the moment but expecting the drop any day! X
Jintz, I heard you've had to go for the big shave! Brave girl. 😍. Dry scalp? Hospital has given me Aveeno to use from top to toe. I've also bought some coconut oil ready for my radiotherapy. X
Jintz, my question is - why haven't you got a prescription for a wig? I don't think you shoul be paying at all. Is it different rules in different areas? I'm a pensioner and definitely couldn't afford the wig I chose!!! My oncologist gave me a prescription the first meeting I had with him. I then went to supplies and was given a wig 'chitty' and a leaflet of the supplier I had to use, who was marvellous. I chose my wig before all the chemo started, so that was one thing less to think about. I really really feel for you if that's not so in your case. Bad enough with new bras, different foods, but wigs are in another financial league altogether!
Ah, just seen Daffodils post. My wig lady did say I was lucky not to have a cost cap, as most Trusts make a good contribution. That's still better than paying it all. It's disgraceful that you have to.
I am on day 2 of second EC. Bad night with nausea but meds helping today.
I used the cold cap again but really found the first 10 minutes harder this time.
Still losing a bit of hair daily but have wig appointment next Friday. NHS wig, no charge. Apparently not all Trusts can afford to provide wigs.
I wish you all a good day and restful night.
Thank you so much for all your support both emotional and practical. I feel I've really turned a corner today which is day 9 of cycle 1 for me.
Jintz - I did stock up with ginger biscuits and ginger ale and although I found the biscuits helpful, the smell of the ginger ale was so awful so I could only drink it if I held my nose (I abandoned this!) Have kept up with the biscuits.
I hope your 2nd session goes well for you today.
Anniej - I read your post and have bravely made a wig appointment. My lovely hairdresser is coming wih me and has said she will be very honest with me, so will see how it goes.
AliOG - In answer to your question about age / children, I'm 54 and have children in their early twenties.
Can I ask has everyone been affected by the steroids? I think because I reacted so badly to the chemo I haven't noticed either a steroid slump or increased appetite? I ended up with additional days steroids because I 'parted company' with the first day's dose pretty quickly after taking them but I haven't noticed any obvious effect on me?
Having a lazy day today just sitting watching Wimbledon in the sunshine and wishing you all well.
Take care all
Thanks for pointing out the eating linked to steroids,I am a bit overweight but usually quite disciplined. The past few days I have demanded cheesecake and had to leave work to have a burger in the middle of the day. I didn't think about steroids doing that until you said it. I hope the hunger subsides now I have stopped taking them.
Jintz, sorry to ask, but why haven't you had a prescription for your wig? You are entitled to one on the NHS. You certainly shouldn't have to buy one,even if your Trust only contributes it's usually a good amount.
Hi Velvet, just dipping in from May group. What a rotten old time you're having! Sending gentle hugs. I'm sure that your oncology team will be prepared for you next session. Just thought I'd give a bit of support re wigs. It does seem to be an issue for some ladies, but I would advise getting your prescription and going along to the recommended supplier to see what's on offer. I'm in the North East and not only was my wig free, there was no cost cap on it, so I had what I wanted! Obviously it isn't human hair, but even the synthetic ones come in at £2-300, so at that price they look good. I have had loads of compliments which does restore confidence . I mean from strangers, not friends and rellys who know about the big C. If you can't find a wig that suits, or decide it's not for you, then fair enough. For me it made a huge difference when attending smart functions. Hope this helps a bit, and hope all goes well next chemo. X
Good for you,I am just waiting for mine to leave me any day now. I'm trying to just go with it,but like you it will be a relief I think. Just think of all those gorgeous bald women there have been. Hope I don't have a lumpy head.
Sorry to hear that, Tripletmum. I know what you mean about depressing yourself. I sometimes feel like my world has become very much smaller since diagnosis and it's difficult to see the light at the end of the tunnel. However, day 6 is still early on in the cycle and you'll start picking up soon. Just keep telling yourself this will pass. You might be having that steroid slump that I had. I didn't pick up properly until half way through day 7. Get someone to make you something nice to eat or drink, have a bath or a sleep, do whatever makes you feel safe and cosy and hopefully things will feel better soon x
Feels like we are collectively making progress this week.
Abulafia, try and rest up today if you've overdone it. I watched a bit of Wimbledon yesterday and found it a great way to pass some time on the sofa. Your son certainly sounds like a scientist already! Fantastic that he's going to Cambridge. My step daughter is about to start a job in Cambridge so we'll no doubt be down there to visit at some point. It's a city I've never been to.
I definitely feel better emotionally and the nurse confirmed that it will be a post steroid crash that did for me. They are going to keep an eye on it for next time but there's not much they can do. I just need to watch out for it and let it pass, I guess. Still dealing with a very distant and emotionally unavailable husband which isn't helping. I suggested a trip out at the weekend and he was about as enthusiastic as if I'd suggested a trip to the dentist.
Does anyone else else in this group have young children? My daughter is 12 and I'm 46. Just wondering what kind of age range/set of experiences we have between us.
Velvet, so sorry to hear about your struggles. Glad you are being well looked after.
Ali0G, my son is studying chemistry, physics, geology and maths. A budding scientist.
I did too much today, and am absolutely exhausted. Brain active, body done in. I'll learn.
All best wishes fo starting 2nd fec tomorrow, Daffodil.
I must be 2 weeks behind you so I'm glad to hear you've felt well this week.
I'll be interested to follow how you get on with hair loss as we both progress - from what I've read it seems to be very mixed and my oncologist said recent research says 50/50 with FEC? I had my long haircut short but not sure this makes any difference anyway?
Wishing you all the very best for tomorrow
Yes I'm really lucky to have my family around me because I don't know how I would have coped otherwise.
My husband has been amazing and my kids are in their 20s so they have all pulled together.
I normally love walking but haven't felt up to going out yet so I'm sure your 20min slow walk with the dog will have felt just the same as a half marathon!! Both are major achievements!
I've bitten the bullet and made an appointment to look at wigs - I'll see what they look like and if I don't like them it will be hats all the way!
It does feel like a big hill to climb but hoping we are on the way up again now - will keep you posted now I'm coherant again.
Thanks, Velvet x
AliOG, so pleased you are feeling better and more upbeat.
Velvet, I am sure the team will give you better anti nausea drugs next time. They are so pro-active at dealing with the symptoms.
I have my second chemo tomorrow. Been feeling good this past week. Still waiting for my wig. Should get it next week. So far hair loss not excessive but started. I used the cold cap and will use it again tomorrow.
Have a good day, ladies and stay strong!
Velvet, poor you! What a nightmare. That sounds really dramatic and not something you want to repeat. I don't have any experiences of it, I'm afraid, but I really do feel for you. I'm sure they'll sort the drugs out for you next time and you won't have to go through the same ordeal. You sound amazingly strong, even though I'm sure you feel wiped out, so give yourself a huge pat on the back. I'm one day ahead of you (26th) and just starting to come out of the fog. I haven't had side effects as bad as yours but I'm hopeful we'll both start feeling more like ourselves this week. Have you got good support at home to help you through?
As for the wig question, I've done nothing about a wig either and really don't think I will. I've used the cold cap and am hoping it will work but, if it doesn't, I'm prepared to go au naturelle. I'm sure I'd look like a drag act in a wig so I'm not going to bother. I might regret it but, if I do, I'll go and buy a bright purple one or something equally outrageous.
i really hope you feel better soon. Keep us posted on your progress this week. I've just been for a very slow 20 minute walk with the dog which feels like a major achievement. Considering I was running half marathons a short while ago, I'm learning to adjust my goals.
Abulafia, a son at Cambridge! That's definitely worth hanging around for. What's he studying? You must be extremely proud of him and your husband sounds great. So glad you're getting well looked after.
Hi ladies hope you are all doing OK.
Well I had my first FEC last Tuesday 27th June and what a week it has been!
I had decided not to cold cap, but then had a last minute panic attack about an hour beforehand so changed my mind and decided to give it a go. I didn't find it too bad at all, but it was later that day that everything went downhill.
I felt OK when I got home from the hospital, but during the evening I started to feel so ill and then started to vomit, and continued to do so on a regular basis which resulted in me spending the whole of Wednesday back on the unit having IV fluids and drugs to try to stop it. I was much the same on Thursday but it did start to slow down and I have improved slowly over the weekend although I feel completely wiped out. The support from my local oncology unit has been amazing but I have felt so sick. I'm terrified that it will be the same in the next cycle but they tell me that they have stronger drugs they will give me so I'm hoping it won't be as bad? Just wondering has anyone else experienced anything like this and did they manage to get it under control?
Also, I haven't done anything about a wig yet and was also wondering how soon others sorted this? I'm kidding myself that the cold cap will help keep a reasonable amount of my hair but really I'm just scared to sort the wig out in case I look awful and its really obviously false. I do have some scarves but its the wig I'm finding difficult to deal with.
I have always been such a confident person and now I can't even make the most basic of decisions.
Hope you are all fairing better than me and hoping it will pick up from now on.
Abulafia, do you find Metaclop really wipe you out? I turned into a bit of a zombie after one of them so haven't taken another.
Abulafia, glad round 2 has gone smoothly so far. I'm hoping that once I'm through this first cycle, I'll know what I'm dealing with a bit better.
Yesterday I really hit rock bottom emotionally. I spent most of the morning crying uncontrollably from my bed. Husband and daughter just had to keep going around me. God only knows what they thought but they stuck with it and were very tolerant. I think my husband is beginning to realise he can't fix this and just needs to be generally supportive and encouraging rather than distant and worried! A friend came to visit and I was still crying. Felt truly wretched and then, pow! It just lifted. I have no idea why but it has to be the drugs leaving me. I felt almost normal all evening and I've woken up today feeling as if there might actually be light at the end of the tunnel which is not how I was feeling yesterday at all. Totally weird! I'm going to speak to the hospital today and tell them what's gone on and see if it can be avoided next time.
Hope everyone else is doing OK. Big hugs to anyone having treatment this week xx
Well done, Tripletmum, for tackling it so positively. I'm sure that's the way to go. I bet you'll look fab.
quick question: anyone else experienced the post steroid crash? I'm an emotional wreck and not sure whether I need to tell someone about it at the hospital.
AliOG, sorry you have been feeling so bad. It does get better and I have been almost back to normal this third week. Ready for second cycle. I know the first 9 or so days will be rough, but worth it.
Some hair starting to fall out tonight, a bit delayed so hoping the cold cap will save some of it.
I have started a Facebook closed group call Breast cancer care July 2017 chemo starters, if anyone wants to join please do. Cover picture has pink roses.