September 2021 Chemotherapy Starters

Hi 

Thank you so much I’m starting next week and I keep having wobbles , getting my hair cut tomorrow and I’m dreading that too , did you have the cold cap . It’s just the feeling ill and I keep reading that nails and teeth can fall out too I just keep reading all the worst . But I appreciate you commenting back to me and good luck on the rest of your journey x

Hi Missy

My oncologist said something really wise - you only read the bad stuff and few positive outcomes; I have found this to be 100% true.  Patients pass on the worst experiences, but you don't hear much of the good stuff because chemo has few upsides.,,

I tried the cold cap on my first cycle; it was a 50/50 deal and all my hair started falling out. 

I got pretty fed up and got it all shaved off by a barber and then my husband did a razor shave on the rest.  I've come to terms with looking like a goblin and nearly 4 months later, I'm kinda ok with it - people stare at me and I actually don't care.

My nails and teeth were fine on EC, so you might be ok.

You will feel ill, but you must tell the chemo unit if you get sick - they actually don't want you getting really unwell and want you to sail through as best you can!!

xx

Thank you XX 

Thank you for youd words of encouragement,  ice cream doesn't sound too bad :-) x 

Hi, I am starting my chemo next Friday Epirubicin and cyclophosphamide every two weeks for 8 weeks, then a break of a month and then 12 weeks of Paclitaxel. I then have to have surgery and then radiology. I feel so frightened.

Hi Betsycar,

it doesn’t sound vain at all. In the beginning when I was first told I’d have to have chemotherapy my main upset was losing my hair which I’d always kept down to my waist. I began EC at an accelerated pace of every other week and my hair started to thin between weeks two and three. After about a week of my hair coming out I was so upset by it I decided to ask my partner to just shave it all off because the trauma of losing bit by bit each day was worse than just saying goodbye once and for all. I was relieved once it was done. I was adamant I’d get a wig and I’d live in it, and the day we cut my hair, me and my friend went and got a really nice wig which is almost identical to my old hair (just shorter because the upkeep of a lengthy wig would have been a pain). The wig specialist was amazing, focussed on cancer patients, she actually said they advise against shaving your hair off because it can cause skin irritation. But there was no way I could keep going every day losing hair slowly. I did try the cold cap during my first session but actually couldn’t brave it - I am someone who suffers with nausea really, really badly and was very nauseous due to anxiety during my first chemotherapy session and the cold cap just exacerbated this - something I still feel that I am a wimp for, as so many other people were able to tolerate the cold cap. However, during that same session, I met a lady who overheard me talking about failing at the cold cap and losing my hair and she told me she’d tried the cold cap but it didn’t work, she lost her hair and bought a wig anyway. It made me feel a lot better. People like that along the way are the little urges of confidence you need. 

Now, several weeks later, unfortunately the treatment didn’t work on one of the tumours I have (two types of cancer in three places), so they stopped the EC. In all honesty, having no hair is the last thing I care about now, having been through so much. Everyone is different, and although our experiences and stories differ, you will adjust if and when you lose your hair. Try and select the advice you receive carefully - I had a really unhelpful friend who, when I told her about how upset I was about my hair, she went on to tell me that her friend who had bowel cancer didn’t lose any of her hair and was lucky unlike me. I actually don’t use my wig, I use a head scarf which I bought on Amazon, it has a lovely floral pattern although Etsy do some nice hats too. I find a scarf suits me better because it mimics the longer hair I had before, whereas a hat resembled very short hair on me which I didn’t like. Again everyone is different and has different preferences. 

Sorry for the long response but when I read your comment about wondering whether you were being vain to worry about hair loss, it took me right back to how I felt and I just feel want to assure you that you don’t need to worry. Hair will grow back. It’s devastating, yes, it’s unfair yes, it’s so many things. But you’re not vain to worry about it at all, and that worry and horrible feeling will subside. 

Good luck 

Thank you so much for your lovely reply. It as made me feel better about losing my hair. My sister suggested the cold cap, but I don't think that is for me, either. As you said, I suppose when you do shave the hair, you do feel better, and get used to it. I hope they can suggest another treatment for the tumour that isn't responding. Once again thank you for your lovely reply xx

Hi,

you’re so welcome. You will get past it. Some people choose to shave their hair and some don’t and both options are fine, all that matters is that it’s the right decision for that person. No one else matters. You don’t have to shave it, but for me personally I found it harder losing it each day - it was like I was slowly watching part of my identity die each day. And that’s coming from someone who, at the start, said I’d never ever shave my hair. A couple of people right at the beginning suggested it to me and I was almost offended at the idea of it, it’s truly amazing how quickly your mindset changes when you are faced with the challenges that cancer brings, and how quickly you’re able to put things into perspective. But one friend constantly reminded me that hair grows back. Same as some cancer treatments can cause nails to fall off, they grow back. All these cells that the treatment kills do renew themselves, ok it takes time but that’s alright. The main thing is keep your mental health in check - this has been my hardest challenge. 

Hi, I finished chemo a few weeks ago and honestly, it was nowhere near as bad as I thought it would be. I had a 6 cycles of TCHP and a few hours of nausea and tiredness for a day or two each time.  I worked full time all the way through and no one would really have known I was undergoing chemo.

I have blogged about some of the things I wish I had known when I started, so this might help you.  https://community.macmillan.org.uk/cancer-blogs/b/one-life-live-it/posts/chemo-side-effects---hints-tips

Best of luck to you all xx

Hi it's nearly time... first EC tomorrow getting slightly worried now.... xx