Another one from June thread. I’ve done 4 x EC and 2 x T so far. Just another 10xweekly T to go. A bit of encouragement for you cold capping ladies. Keep at it. The head pain during the first one won’t be repeated. It’ll only be a few minutes rather than 15/20 for subsequent treatments. I’ve kept the majority of my hair so far though it’s a bit thinner on top (it wasn’t that thick to start with). The really hot weather didn’t help in trying to keep my scalp cool especially on Southeastern on my commute to work. When it was 32c I couldn’t get the cold cap on quick enough. I think my hair is even still growing judging by how unkempt bit of it are after my nice tidy pre-chemo haircut.
I was a bit like you with the dizzy head and fatigue. You might not feel like it but try and get out for a little walk - after a 15 mins walk round the block I felt like a new woman and haven’t looked back since. Give it a go! ??
Hi Jo
My second chemo is also 20th!
Any tips for the wig? I’ve got my wig appointment this Wednesday & for some reason feel a bit nervous about it
Jude x
To be honest I’ve not really had any side effects with either. I had to have the filgristim injections with EC and had a bit of bone pain in hips and lower back but only for 1 day per cycle. Apart from the nothing although fairly fatigued during the really hot weather (fine when it was cooler) . I’ve still gone to work every day apart from treatment days the two days sorting out a blood clot in chemo arm. For me the T is a bit easier because I have less steroids even though I got the Oncologist to halve mine during EC which, being diabetic, means my blood sugars are more controlled. There are also no extra meds for me to take with the T, it’s all done by infusion on the day. I do have the domperidone to take as and when should I need it but I’ve not needed it at all and still have the original packet I was given with my first cycle of EC. All still takes just as long and cos I’m cold capping I’m at the hospital 5/6 hours each time.
Hi Sally
You have my full admiration for still getting into work - for the first 10 days there was no way I could have got there. I am able to do some work from home but that was very limited due to the heavy nausea
I am getting different anti sickness med next time, a tablet for heartburn & they are going to prescribe diflam? for my sore mouth & ulcers
Good luck for the rest of your treatment
Jude x
Hi Jo
I live in Huddersfield & my treatment is all at Bradford. I can get a wig on the NHS & they are from a lovely shop in Leeds. I’ve had a between jaw & shoulder bob for years but had it cut shorter before my first chemo & am due back at the end of this week to go shorter again!
However my scalp is very tingly & I have a lot of loose hairs so it’s starting…
I’m thinking of getting a short wig on the NHS & then buying a more flamboyant one for the odd occasion out!
I’ve got a friend coming with me who will give me an honest opinion - maybe too honest ?
Jude x
It is lovely to be home, however I am now counting down until next chemo.
Can I vent my fears to my fellow travellers please? I’m so scared…
I’m now also having a PICC put in 2 days before. Letter was on the doormat. After the pummelling my right arm has taken the last week or so from needles, IV and blood tests I really don’t feel ready for any more. Of course, left arm is shot because of lymph nodes being taken out.
I am an artist and I’m scared of losing the use of my arm. Also, as left arm has some awkward numbness and pain, I’ve taken to sleeping on my right side, but now I know I will have to be careful about the picc. Trying to be positive and hoping now though to make my own picc covers.
Hair is still intact on day 12 today but I’m told it will start to fall soonish. So am having it cut short tomorrow to prepare. I think I might cry. I’m usually very choosy about hair styles; was an art student in the 70’s and love playing with style and colour.
Its so so good we have one another… thank you all for sharing your stories, and for listening to mine.
On Georgie you’ve been through so much in the last few days you are allowed a wobbld and rant. I haven’t experienced a picc but several on here have and are so happy with them and have no trouble. I’m sure you’ll be fine. Talk to your nurse about your worries over use if arm I’m sure it will! Be ok. As for hair, I cried e buckets shaving mine, it is tough but much worse was the constant hair shedding. As an art student you will rock any look, just see it as a new experiment, j have heard lots if ladies live the bald look and embrace it, I’ve gotten used to it, although I would be lying if n said j didn’t miss my hair. Allow yourself time and z good cry if n need to, if help s. Take care
Long term the picc line should help especially if you need any other treatment antibiotics etc - not that I have any experience of one
Really feel for you as an artist but fingers crossed you will be good as new at the end of all this
I’m on day 15 & I am moulting prolifically now - have to say it’s horrible, I’m dreading washing it tomorrow. Having an haircut on Friday but whether it’s just a short pixie cut or a full blown shave I’m not sure yet
Hi Georgie. Glad to hear you are finally home! I had a Picc line put in the day of my first chemo. It was completely painless. From then on there are no more needles. The district nurse comes once a week to flush the line and takes bloods a couple of days before chemo. I have some very pretty covers from Etsy online. The hospital gave me a Limbo cover for the shower which works a treat. It doesn’t restrict my arm at all, and sleeping on it is not an issue either. Kx
So I made it to day 12 before the shedding began, I thought I’d get a tingly scalp beforehand to warn me of the imminent loss but no, I have (had) very thick wavy hair so wary of shedding I’d been avoiding the brush and comb and just running my fingers through it in the morning before going to work but yesterday a quick run through left my hand looking like it had a thick coating of long fur lol. Of course morbid curiosity had me do that a few times throughout the day and the loss was great each time, panic stations! As soon as I got home I asked my daughter to shave it that very evening, as I’d lost so much that day I was worried about what would greet me in the morning, having bald bits or scraggly hair would have distressed me no end cos my hair has always been my crowning glory and the envy of the rest of my family. I have to say that was THE BEST decision for me, going from a full(ish) head of hair to bald wasn’t upsetting at all, I had expected tears but there were none, from any of us. I think that’s because it was my decision to take control and ‘brave the shave’, of course it’s been less than 24hrs so that may yet change haha. I have a bamboo wig cap and that makes the headgear that I’d bought in preparation comfy to wear, no rubbing or chafing, I don’t know how I feel about wearing a wig yet but I guess it’s early days.
Local hospital and I are practically on first name terms now as my temperature is high on an almost daily basis but so far no overnight stays or antibiotics have been required so perhaps I’m a naturally hot person, it’s just so annoying and time consuming to have to go there all the time even though I know it’s necessary…
SE’s have been pretty sparse the past few days and as my second round is next week, I’m hoping I’ll be feeling ok until then, it’s nice to have good days ?
Chin up everyone and keep posting, it’s so good to know we’re not alone in this
Hello, I’m on Day 5 following first FEC cycle - I was completely unprepared for how spaced out & confused I’m feeling. Struggling to string a sentence together at times! So weird - anyone else have any experience of chemo brain? I was expecting the nausea and fatigue but not prepared for how chemo affects your thinking. Any tips much appreciated! Thanks, Anna.
I experienced this too - I could forget what I was saying whilst I was saying it. I did find that it passed. All I did was just rolled with it, laughed it off and tried not to worry about it. I also found fresh air and a short walk helped and I’ve recently started doing puzzles (suduko and arrow words) to help with concentration. I’ve found I’m better now (I’m on day 14) and to be fair I was starting from a point of menopause brain and been off work a few months brain too…