Yay to treatment going ahead… whoooo… what strange world it is when we’re happy to have chemo!!! One step closer to the end
So FOOD… how is everyone eating? Once I’m over the first few days of feeling odd, I seem to be having cravings. Almost like pregnancy cravings. Anyone else? At the weekend, I saw someone in the distance eating nachos (really lovely gooey stodgy ones) and I find that I’m dreaming about them!!! I read somewhere that chemo makes you want to eat carbs and starch so I wonder if that is true… as I certainly don’t have dreams about kale and salad!!!
Glad everyone is doing ok - minus the hair stuff - which sucks - but remember it is temporary xx
Just popped on to catch up & read about dreaming of nachos and now that’s all I can think about too…think I may have to rethink dinner plans to satisfy myself!
I’ve been concentrating on trying to eat 3 meals a day, having always been someone that probably skipped one meal most days and ate biscuits etc to fill me up! I can’t say I’m managing to eat much more healthily at the moment, despite wanting to, although last night I did cook up a veggie bean stew to last me a few days to try to get something healthier in me during my treatment week. I figure eating is important to try and contain the side effects of the chemo, so I’m making sure I feed myself but with whatever I fancy! (Probably not the best advice, but got to find some happiness somewhere with what we are going through!)
The hair shed sounds tough, I think I’m probably days away from this happening. I cold capped again for my 2nd treatment today and found it really hard to make it through to the end and was demanding the machine was switched off the second the countdown was over-my head is still aching from the tightness 3hrs on.
@donna_51 Oh god the cravings are horrible and once I fixate on something I need to have it in the next day or so despite having a fridge full of food! Is this what pregnancy craving is like?! Now that you mention nachos…
@ljlj I’m exactly the same with the paxman countdown! Strangely the first hour/two hours is ok for me and then that last 1 hour-40 minutes kills me. I find every noise and light painful by the time it’s up.
My partner has taken it upon himself to switch the paxman off as soon as that last second is up. So far he hasn’t gotten into trouble but it’s definitely coming!
One thing I tried in my last session (my 6th) was wearing a medium ice cap but a small outer grey cap. I felt much more secure and that it was actually colder than previous times. Just if it helps anyone!
Sending lots of love and thoughts everyone’s way. Seems we’ve all upped a gear in terms of difficulty now. I hope the nachos & whatever other comforts everyone finds works for at least a little bit!
The shedding continues and can see my first bald spot. Strangely the first day I cried and now I just want the hair out so my scalp can heal it’s quite painful. Pacman recommended some natural oils like olive oil to help the scalp wondering if anyone has any other ideas. I’m going to try the cold cap next week for 3rd cycle in the hope it helps regrowth. Anyone have any cute head scarfs or headbands? Before treatment started I didn’t want anyone to know I’m sick so really wanted to avoid a bald head now I feel so rubbish, I want people to realise I’m not well. Sorry for rambling post, awake at 630am and lots on my mind
@kcg0610 I had the medium cold cap with a smaller outer one too. Didn’t find it too bad after the initial 10 mins. Will see how it goes Friday
@bridget1 I have a couple of wide stretchy head bands for plan A, hair thinning. If cold cap doesn’t work I already have one or two scarves to try (and my back up wigs which are on their way!) I was quite open about my diagnosis from the start as I found it easier if every just knew. I told my family and close friends then just put it on FB (friends only) and used it as a reminder for people to check their boobs! I find the support off everyone really helpful. I do understand wanting to keep it private though.
Re hair/scalp treatments, I’ve heard about Weleda Hair Tonic. We have a Weleda shop locally and apparently the lady who runs it is really helpful re their products, so going to nip in and ask her about it soon.
Nachos I had at the weekend and loved them - how funny. Yes carbs are calling - it was ice cream when I was pregnant! After session 1 I was trying to be super healthy - no processed food, chicken fish and veg only. That didn’t work as I found I had to cook each night and was too tired. Now prepared food week one and don’t beat myself up and healthy food weeks 2/3 when I am functioning better. 80/20 rule. Still like the carbs though .
Hair coming out in lumps - felt a bit sorry for myself yesterday but today doing good. I’m sure next week will be the bald patches and the shave. Don’t think I dare wash it again!
We are doing great - even in the bad days - big hugs to everyone x
I wore a M inner and outer last time, and realised yesterday they had put the S outer on me yesterday so I wonder if I was suffering more because of that-last time it was the last 30mins I struggled with, but yesterday I feel like I struggled for 90mins or so!
Keep going with it lovely xx
Happy Thursday everyone.
I really love our little community on this forum. It’s so lovely to know we’re not on our own.
I’m starting to worry about my second EC treatment next week. Can I ask anyone who’s had two treatments to tell me if cycle 2 is significantly worse than cycle 1? I know we will all be different, but I’m worried about the accumulative effect. Thank you
@alig1961 I found the second one easier than the first. I had less nausea and constipation. I found the third one tough again as felt very nauseous during and the evening of the treatment.
I had my second treatment on Monday. I felt worse on Monday evening than after the first one - quite nauseous, but i should have taken the Odansetron earlier. Tuesday no problems, Wednesday and today fatigued and slightly lightheaded but over all better. My main problems last time were from day 5 with bad tummy pain and diarrhoea. Nothing so far
Thank you @rosa1 and @pat an insight is good.
I just want to get it over with now. I think I’m worrying about session 2 more than I did for session 1.
On another note I braved the shave this afternoon. Couldn’t face doing it myself or have hubby do it for me so I went to my amazing hairdresser. Pic below. I don’t mind it and I’m pleased I took control. I could probably have got away with my hair for another few days but didn’t want to shave it when my scalp was sore. I can feel that it’s tightening and I lost quite a bit of hair in the shower. Also, I didn’t want my hair sticking out under my wig. If we go away in the campervan at the weekend now, I know what I have to do, take my wig!
Good on you for taking back some control on yourself @alig1961 sending you loads of hugs! I tolerated my second EC better than my first. My nausea and acid reflux was pretty much under controlled because I made a big fuss about how bad I felt to my oncologist and he upped my omeprazole dosages a few days before chemo and gave me some super strong anti-nausea meds that were directly injected with the pre-infusion cocktail.
Honestly chemo is really crap on its own, and medicine has come a long way to prevent nausea and heartburn so defo insist with your team on switching meds if you’re suffering.
We got this team June! (Probably not our hair though haha)
@alig1961 …well done for the shave, it looks good! Your wig is fantastic, honestly … you rock both looks so go for both looks over your weekend away! I am very envious of your campervan now… I’ve been looking at (maybe) going away for a few days in August but would love the freedom to just take off in my own van !!! Enjoy, you lucky thing x
My round 2 was easier as they adjusted the dose and didn’t give me any steroids to take home (I think the anti sickness infusion pre-chemo still had some)… so first few days okayish a bit like the first few hours of a hangover, but after that felt ok. BUT by ok, I mean up and walking the dog for up to an hour and working from home - definitely not my pre cancer energy levels by any means. Partly because I’m taking it easy and being kind to myself not rushing around like normal after my family but also because I do feel tired… not exhausted but a general feeling of ‘can’t be arsed to do that’ … which definitely isn’t me!
Maybe I should push on through that feeling but I don’t think I’m going to. I’m quite enjoying watching tennis and footie and dreaming about nachos!!! + not doing house stuff is liberating and seeing the chaos evolve around me is like a mini experiment (1 man, 2 teenage boys and a dog - imagine!!!)
@akioqey that made me laugh… ‘we have got this, but not our hair’. Sounds like a slogan in the making !!!
@alig1961 I had session 2 on Monday and found it a little easier because it was shorter - took steroids at home this time. I did get a little anxiety as the routine wasn’t exactly the same as the first so it may change slightly but the principles are the same. After I’ve felt similar to last time - a bit of reflux and just tiredness. Not too bad in the grand scheme of things.
Well done on the shave - I’m on day 28 and going to wash it today - it’s close to going - your wig looks fabulous! Go girl! Have a super weekend all.
Thank you ladies @collywobbles and @donna_51. Your kind words and insights to round 2 are very much appreciated. I met with one of the nurses today and so shared my concerns. She said that the fatigue tends to be the part that increases in intensity each time and that all other side effects are manageable, although I did stump her with how to address the headaches and spots under boobs and in cleavage (tmi). But, good news I can still go in the hot tub and she recommended soaks in the tub or bath to help alleviate bone ache.
I feel a bit happier about session 2 now on Wednesday. I also feel happier about the wig as I wore it in public for the first time. It feels like every day presents a new worry but at the same time each day another little hurdle is achieved. It’s a very bizarre time.
I found the second cycle symptoms lasted longer, first cycle took 3-4 days to get over, second time round was the full 7 days but I did get back to a good week eventually
Hi @bridget1 I got it from wills wigs based in Bromsgrove. They come to Shrewsbury hospital once a week and were suggested to me by the hospital. I was given a prescription for £160 from the oncologist and this wig cost £170, so I only had to pay £10. It’s synthetic which makes it really easy to look after. I practised washing it a couple of days ago with a teaspoon of baby shampoo and luke warm water then rinsing and lastly putting a teaspoon of fabric conditioner in a bowl of Luke warm water and letting the wig soak in it. You don’t then rinse again, it’s like a leave in conditioner. Leave to dry and it just goes back to its shape. It’s fab. Apparently you only need to wash it every couple of weeks. I used a wig band today to make it feel more secure. I’m trying to embrace it. It is nice to take it off though. Sorry, I gave you a lot more info than you asked for then
Good morning all.
I hope everyone is as well as they can be and having a good weekend. I imagine that most of you are already aware of false fringes but in case you weren’t I thought I’d share my pics with you. I love them! I got it from Fringe » Average, HairWorld » Wigs4U
It was £18. But if you’re someone who likes hats but not wigs but feel naked without some hair around your face, then this is great. I’ve attached the fringe to a wig band which I’ve started to wear to secure my wig on my head a bit better, but the fringe is Velcro so can stick straight to the hat material. Have a good weekend xx
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