I had my first chemo and cold cap on a really hot day so it was great and didn’t need a blanket etc. No icicles on my hair as they gave it a few minutes to “warm up” at the end of treatment. Total time with cold cap was about 3 hours - or should have been I in fact had a delay of 3 hours befoe starting the treatment!! I seem to have had quite a long gap between my mastectomy and chemo so it seems to vary quite a lot - surgery 22nd April and first chemo 1st July but pleased to have had the time to heal and feel almost human for a coupe of days.
Hope everyone is feeling well today. I’m off to see the chemo unit on Thursday and to look at the cold cap - going to give it a go at least. Manicmum and Jo - it’s hard trying to explain things to your kids isn’t it. My son is grown up but I have two girls, 16 and 18 who were in the middle of A levels and GCSEs when this started and I felt so guilty for having this disease! I have been really positive to them and that’s difficult when you feel your world is falling apart, but we women are made of the strong stuff (got to keep telling myself that).
Jo - you have reminded me that I need to drag myself to the wig shop next week as need to fit that in between working part time and going on holiday on 23 July. Sending big virtual hugs to you all xxx
Morning all. Hope everyone is well and enjoying the sunshine as much as possible. Ros hope your first chemo session went well today.
This is my first post and I am loving your ladies positive and encouraging thoughts and feelings. I found a lump in April and I honestly can’t believe how fast things have happened, I was diagnosed with stage 2 er+ and her-. Although in all honesty I still don’t understand what it all means. I had mastectomy and lnb in May followed by a second op for a flap clearance (which is such an unflattering thing to call it) and further lymph node removal. I found out yesterday that Thankfully no more lymph nodes have been infected with the dreaded C and my flap is now clear!!! First oncology appointment is Friday so I am thinking that chemo will start any time after that so would like to join your group.
I too have a 10 year old daughter who was in the middle of her sats when I had the first op. Bless her she has been a little diamond and I have to agree it is probably one of the hardest things I have ever had to do is to try and explain it all to her. We have been honest though and I think at 10 she understands a bit but I would hate to think I had to try and explain to a 4 year old it must be so hard.
We’ve been making jokes about Cher wigs and Daughter is looking forward to wig shopping but I think I’m going to follow some of your examples and try the cold cap.
It’s right what they say the two things that probably make us the most feminine are are breasts and hair and not sure emotionally how we will all cope losing both!
I agree with the other posts it’s not easy for friends to understand fully and the amount of people that said to me yesterday “well at least you can relax and enjoy the summer now” was untrue. Yeah summer is gonna be a blast for us all in It! Although I don’t intend to sit moping if at all possible.
Looking forward to beating this bleep bleep thing with you all.
Sending positive thoughts, love and hugs to you all.
Manicmum glad your CT scan and MRI were clear and that your girls had fun trying on your wig. It must be hard for you and DiscoD with young girls - its bad enough for me and mine are teenagers. Having said that your kids love you unconditionally and its surprising how resilient they can be. I’m trying to stay positive, but its difficult for us all in this horrible situation. I’m going wig shopping on friday as although I’m hoping to try the cold cap, I’ve heard a lot of women lose their hair anyway. I’m taking my sister and one of our best friends and also my youngest daughter as we are staying with my Mum in London for the night, so that should be a giggle. I’m also going to have a port put in (think they said in the chest) which doesn’t sound nice so if anyone has had one of these please let me know how you got on. Hugs, Carole xxx
Thank you for the information Tweasel and Kate2 - good to know that it’s easily doable. I went to the chemo unit today and met some lovely nurses and also others who were undergoing chemo. One man very proudly showed me his port (and his tanned chest!) and a lady who was trying the cold cap for the first time spoke with me and she also had a port fitted. They booked my port fitting and first chemo for 6 August when I’m back from my hols so theoretically shouldn’t be in the July thread but like Nico, hope you don’t mind if I stick with this one xxxx
Nico I hope you’ll be able to visit the chemo unit before your treatment and at least it will give you a feel for the place. I totally agree and also just want to get this started - just seems to be one hospital appointment after another at the moment but nothing really going on. Going for an echo cardiogram tomorrow as there is some history of heart disease in the family and I have to take Herceptin. Hope your port goes well Manicmum - must say after actually seeing it and reading the lovely posts on here feel much more confident about having it. I was told I wS having a PICC line but nurses referred to it as a port so maybe same thing? Lalie and everyone who has had first chemo hope you are doing ok - I’m having 12 weeks of taxol but not sure if anyone else is having this - hope you enjoy the rest of her weekend xxx
Hello all. Glad to have found this group! am due for 2nd FECon Thursday 16. I have had a lumpectomy and LICAP. Wore cold cap and didn’t mind it too much but I have thick hair which apparently helps. Side effects from FEC not too bad. First week was tired and has no appetite and constipation or the other way! Am shedding hair but not handfuls. More a few if I run my hands through my hair (am trying to be disciplined!!). I am wondering whether to get a wig now, the weather to see if it’s just a shedding or if I’m losing it. My cancer was a rare type called invasive medullary carcinoma. Am seeing a geneticist as there is possibly a link. I was lucky with no lymph node involvement. Cxx
Hi Fanta-B glad to hear that your diagnosis was good. I’ve heard that thicker hair fairs better with chemo - mine is fine but there is a lot of it. I’m also going to try cold cap but went to wig shop on Friday to try some on as I intend to get one on line if mine starts to fall out too much - apparently they take about 3 days in the post if you’re not going for the real hair wigs. I think I’ve decided on the Tatum as its close to my own hair. Good luck with your second chemo next Thursday xxx
Hi all had my first chemo session on Friday was fine not had many side effects so far apart from feeling slightly sick that night! So fingers crossed it stays that way! Good luck to everyone going or starting treatment soon xx
I hope you don’t mind me joining in. I’m due to start 1st chemo on Friday. I’m having 4 x TC. Is anybody else I the same regime?
Hope you are all well
l wanted to share my weekend with you guys to show that we can still enjoy ourselves during this treatment. Before I was diagnosed I’d booked to see the fabulous Bette Midler in Manchester. Thinking that the drive up on Saturday and back on Sunday might be too much (I live in S. Wales), I booked a night in Blackpool on Friday to break up the journey.
I had a fantastic weekend, a real tonic. I sang and danced and forgot about the cancer and treatment for the night. Earlier on Saturday in the hotel, my hair started to fall out big time but all over, not in clumps so didn’t notice to others ( I was on day 19 of my 1st cycle of FEC). If I’d been home I probably would have been upset but, with a night to look forward to, I just combed out the loose hair, put my make up on and had a great night.
I’m now planning a treat for the third wk of each cycle. Not on the scale of a Bette Midler concert, just simple things that give me joy, like a trip to the beach.
My second treatment of FEC is on Friday and already I feel more prepared for it because of the lovely experience I’ve just had. My partner was concerned that I’d done too much, my reply was I’d do as much as I can, when I can. Wishing you all well and hope you manage to get some good times on your good days x
It’s so helpful to read all of these posts! I have been avoiding brushing my hair and have had a couple of dreadlocks that I have had to comb out resulting in much hair loss. And I feel so out of control with the hair loss thing. After reading these posts I think I feel tempted to go for a short crop at least, but then, what if I manage to keep some or even 50% of my thick hair?! I used to have long hair that I had cut short in preparation, to shoulderlength. But seeing hair fallout is so distressing and messy. Arrrrgh!
Well done holly. Glad you had a good time. I’m definitely going to follow your example and set something up for around day 19! It will definitely give us all something to look forward to! Am well jell about bette. She’s in Leeds tomorrow and I couldn’t get tickets! Gutted
So good to read your post Holly. Sounds like you had a great night!
Hi everyone, please can I join you? I’m starting chemo tomorrow so the nerves are really kicking in! I’m 45 with two boys of 8 & 10. It’s lovely to hear other people’s experiences and you are all so positive! The oncologist said that people who are younger, had bad pregnancy sickness and don’t drink alcohol are most likely to get bad nausea … It gave us a smile at the time as my immediate reaction was ‘then I’m stuffed’ and everyone laughed, but if I’d known, I’d have been getting in training with the wine…! Take care everyone, x
You’re right Joyce, we don’t know what lies ahead and I’m preparing myself as my oncologist said that the side effects get progressively worse so I’m appreciating every good day I have. Fanta, I too had my hair cut in prep - from shoulder to short style. My hair is continuing to fall out and I also plan to have it shaved but think I’ll wait until it starts to look patchy, at the moment, it’s thinning all over. Disco D, I’m sorry you didn’t manage to get a ticket to see Bette, I was just very lucky to be on the internet at the right time. Best wishes everyone x
I haven’t heard that one. Looks like should be no nausea for me. Although I’m 41 (i have a 10 year old as well). I had zero morning sickness and have plenty of experience with the alcohol!!!
Good look tomorrow
Like you Holly my pills worked and managed with the odd ginger biscuit and many glasses of wine - seemed to help the sick feeling - strange that. Unfortunately yesterday took a downward turn when the hair loss thing became real. Am hoping that it is just where the cod cap didn’t fit well and seeing the hair dresser tomorrow to go even shorter so that it is less irrittaing to me.
Hi Holly, I now have a bald patch on the top of my head which I can hide with a headband. But to be honest, I’m starting to hate my hair as I can’t brush it, so it’s a total mess. And I’m leaving it everywhere, all around the house! I want to be happy with my wig first before I do any drastic shaving. Not sure about the bandannas I got now… I’m in hospital now about to have a portacath fitted. Second FEC tomorrow. I wish I knew if it was worth doing the cold cap or not… I feel it’s not but feel I should keep going with it anyway… I will take their advice tomorrow. Xxx
Hi manicmum, what a horrible frustrating day and no wonder you feel so fed up - it’s so unsettling when things don’t go to plan. I know I cope best when I know what is happening and when - we have so little control over what is happening and losing the little we have is bad. I hope you get a good nights sleep and a good day with your class tomorrow, x