Katherine,
About the headaches: make sure that you are drinking enough fluids and, more importantly, have a word with your oncology department or go and see GP. Should tell them if you are getting side effects as they can often prescribe something to sort them out. Don't suffer in silence.
Gilly - we won't be strangers for much longer! As you will know from the FB page by now, yes, I'm in.
Penn
Penn, Have you been accepted? I have just done 2 new ones, but I have no idea of peoples real names, its like a bunch of strangers so far..lol xx
Gilly,
I've sent you a friend request for the Maisies's FB page... at least I think I have. Don't use a personal FB page so it's a learning process for me. FB has absolutely nothing on it! I will have to put a picture on it.
Best wishes,
Penn x
(Ah, I've just managed to put a photograph on my FB page - success!)
Tolliebelle (Jill),
Very sorry to hear about your cat Daisymay. It is the mark of how much impact our pets have upon our lives that we grieve for them when they are gone.
Hello Daisymegan,
Glad you are feeling bright and positive.
I had a reaction to my bone stimulating injection. After first daily lenograstim I had high colour, rash, tingling in hands and lips, cough. Saw GP who contacted oncology and swapped me next day to the slow release 7 -day version (Pegfilgrastim) which I took after first taking piriton. Also a reaction, but less so and controlled over next few days by anti-histamines. Hoping 3rd version will be better or at least any reaction more controlled by pre-loading me with anti-histamines. Don't worry, allergic reaction to these drugs very unusual according to the hospital pharmacist who I spoke with this morning.
Penn x
Afternoon Ladies
Well have done my 3 hours in work! Got to say didn't really do very much but it puts going on to half pay back so will have to continue! Am in for rest of this week and then Mon next then get rest of that week off after dunking on Tues 3rd Sept.
Had to have my cat Daisymay put to sleep this morning so very sad day! She was 14 but has had epilepsy since she was born and no one gave her longer than 6 months so she has done very well.
Hope every one has had a good morning and Gilly thanks for FB group see you on there!!!
Jill xxxxx
Sorry Penny crossed post. Hope they sort something out for you. What was your allergic reaction?
TCH cycle 1 Day 9
Hi Maisies,
Thanks for all your lovely replies the other day. It made me look at things differently.
I have managed to read through the posts but have pretty much been exhausted and although the first few days after chemo were good, I have just felt worse - especially in the head. I expected chemo brain was just going to be feeling a bit fuddled but it's been more like really weird connections and disconnections with me plus feeling restless but unable to do anyhing. I can't work out if it's the chemo or the anti sickness tablets - Metoclopramide Hydrochloride.
I have also had real taste changes - nearly everything tastes of salt - even water. Worse is that I have gone off tea which has always been my answer to every crisis!
There's been a bit of a discussion about age - I am also 51 although I feel about 81 and have been walking about looking like a question mark.
Pendragon, it seems like good information you got. My nurses were just too embarrassed - mind you my husband was too when I started to ask questions! They also said for the whole of chemo to me. The only useful thing one of them said, was that you are more prone to infections so she suggested condoms or abstinence! It was like something out of Call the Midwife!
Hope everyone is having a better day and that infections are clearing up.
Good luck to those starting this week. Will be thinking of you. x
Dear Maisies,
FEC#1 Day 21
Back from appointment with consultant at hospital and the good news is that I am fit enough to have my chemo tomorrow – hooray! (Never thought I’d be cheering about the prospect of systemic poisoning, but the sooner it’s done, the sooner it’s over). So relieved.
Consultant not so happy about my allergic reaction to bone marrow stimulating injections (tried one each of the daily lenograstim and one 7-day Pegfilgrastim) after last chemo. Going to try a third form of injection, load me up with IV antihistamines (Cyclizine) prior to chemo, dose me with Piriton on days after. They are re-testing bloods next week to see if I need to continue taking the bone marrow stimulating injection, or whether I can manage without. Could be asleep most of the next few days!!
Consultant also prescribing anti-biotic for PICC line infection to a have on hand if infection is not resolved by anti-biotic dressings. It is still nipping a bit, but should be on the mend. Now if I could just stop the soles of my feet itching…
Venice25 – Good to hear from you. You may not have further horrible side effects – we are all different. I found that my energy levels were returning by week 2 and I’ve had boundless energy in week3. Just take it a day at a time.
Bonski – it is lovely that you have had such good support, particularly as you are so far from home. The Regimental Family is a wonderful thing. Yes I work full time or did until my mastectomy 2 months ago. I was then signed off for 3 months with the expectation that it will be another 3 months on top of that. Fortunately I can do a bit of work on the computer at home and every now and again I pop into work to see how they are getting on without me (fine it would seem!).
Rollercoaster – don’t worry about losing the hair. The thought is worse than the deed. I had mine clip off to v. short stubble at wig fitting last week and haven’t worn wig since. Quite happy with (almost) bald head. Could be a bit chilly in the autumn though.
Gilly – Facebook page – well done on organising that. I will have to create a Facebook account for myself and then join the group.
Pas_the_boss – for chemo sessions, lots of water, frozen ice lollies and a good book.
Lynnk – itchy skin? Try E45 or similar un-perfumed aqueous cream. If that doesn’t smooth try aqueous calamine cream (like calamine lotion but in a cream form and doesn’t leave a white, chalky residue).
Morning maisies, what a lovely sunny day I hope se's are minimal for everyone and the girls up today at the bar are doing okay.
Well got my lansoprazole today in prep for 2nd dunk on thurs so hopefully it will sort indegestion and heartburn out yipee.
Have a good day maisies debs x x x
Portsmouth is about an hour and a half from me. There do seem to be more in the north of the country for sure xx
Morning all,
Woke up to a beautiful sunny day, so I've decided to go cycling on the canal after lunch. I have an electric bicycle, so if I get tired on the way back, I can put the throttle on and put my feet up and enjoy the ride Hopefully I will be ok later and not regret it.
I have a FB account, but only go on there once in a blue moon, as I cannot really be bothered with FB at all. I will think about joining (please don't take offence if I don't), but think at the moment I have enough coping with email, and the postings that I do make on here. Good idea about making the group private. Myself, I'm not bothered who knows about my condition (think as you get older these things don't bother us as much), but some only want close family etc., to know.
Hope those with se's are starting to feel better. I'm making the most of this week whilst I am able.....before my 2nd dunking next Tuesday.
x
Nicola, my OH has had the snip so I dont know re protection, but I know I have read that you need to protect them form the chemo for the first 4 or 5 days, so protection is best. To be fair sex was the last thing on my mind for the first few days anyway!! Only now on day 8 am I even starting to feel human again xx
Morning ladies hope everyone is doing ok this morning, good luck to all those up today not sure who as i havent been on for a while due to been so dizzy and sickly, can anyone answer me a personal question as i seem to be getting mixed information, with regards to sexual protection does anyone know do we need to use extras protection throughout the whole of the chemo or just the week following, thanks
Anne I am in Sussex xx
Rose you should just be able to click on the link and it will take you there. Then you just request to join the group xxx
Hi Maisies - its beautifully sunny and warm down here in the South. To join the FB group do I just click on the 'join group'?
I've also got a nice spot Lols - first time in ages I've had one of those! I've got my pineapple chopped up and freezing - really hope it helps, my mouth is very sore today.
Anyone else live in the South? From the posts I've read you mostly seem to be further North?
Anne-Marina
yes its nothing to be ashamed of, i just dont want people gossiping about me lol and telling people who im not friends with whats going on. my home town is a bit like that so i would be talked about in the circle of people from my past.
It certainly isnt and we have not caught some dirty disease, we have been unlucky, simple as xxx
I understand Lynsey, it is safe and private hunni xxx
Our new page. This is completely closed so no one can see anyones postings apart from us that are members
https://www.facebook.com/groups/165815423611027/
xxx
thanks gilly r have joined good luck to all today at the bar and to those not too well hope things improve, im jst v v v tired all the time my nurse says thats quite normal!!
Lynsey I can make our group a secret group so only us members can even see it. So you dont have to worry xxx
yay Ju its brightening up a bit here as Peter Kay says a bit of blue ( for the dads!)
BTW my claim to fame is that on the Peter Kay top of the tower dvd at the beginning when the crowd go up the stairs Im on it with my first ( ex husband) looking much younger it has to be said!!
Lynsey you can join our closed group and I can make it secret too if peeps want me too xxx
I have started a closed group now on FB. Here is the link girls
https://www.facebook.com/groups/165815423611027/
See you there for a coffee and a hobnob
xxxx
I agree with Lynn .... FB page might be better as a private page...just a thought??...... for those that would like to get involved but dont want every man and his dog knowing whats happening to them.
xx
Morning, actually feeling normal the last couple of days I hope it stays like this until my 2nd dunking in two weeks. Picc line bothering me I think, have pain under my arm which wasnt there before is anyone else having same pain? Great idea Gilly on FB, apart from close friends have not made my condition known to all my friends on FB as I like to keep some normality but will certainly keep an eye on the link. Anyone going this week for their next dunking, good luck and hope all SEs are minimal xx
Gilly think if make it a private group then we can go on it and we dont have to worry about our other FB friends seeing it. Is that right????
Ive liked it so imagine my fb friends will see Ive liked a page but mine all know anyway
Christy if you open Gillys link it takes you to page on FB and from there I think you can just register. Think all you need to do is put your email address and a password. Im not very techie with FB but think thats all you need to do
I know that feeling too Chezza, its so fustrating!!
white blood count doubled thats brilliant at least we know those blasted injections are doing their job Lyns. You must feel like the bionic woman now with all those super duper white blood cells. Throw some my way!!!
Welcome back Lynsey!! xxxx