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
Thank you Sue and Jude,
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.
Hi ladies, to a!l of you out looking for wigs, try lots of styles and colours it's surprising what ends up suiting you. I always had past shoulder length hair but cut it really short pre chemo and everyone loved it but I was sure I wanted a wig like my old hair but wow none of them suited me so have gone for a short wig and it looks great and is easy to care for. It's fake hair but feels real and easy to wash. Just do it once a week if feel like it, stuck it in the sink with wig shampoo and cold water. Swish around, same with conditioner then pat dry and hang in head stand over night, quick shake in morning and it's back in style. So easy. If you can get a bamboo wig liner, it makes it more comfy to wear. Only downside the they can get warm. I wear hats or go bald around the house. For those of you with the head tingles that does sound like the start of shedding, be brave you'll get through it, once it's gone you can stop worrying about when it will happen. Take care, glad you are all getting through first chemos, I've had no 4 today, first T so I'll let you guys know what's that's like or pop into June chemo starters. Take care Kip X
i am going home today after being in hospital 4 nights.
Am a little bit scared in case my temp climbs again. Would so hate to have to repeat this 😫
Georgie Gee xxx
Yes I had mine cut really short and also managed to get a short wig. I currently have quite a few grey hairs coming through as I haven’t coloured it since diagnosis....the wig just looks the same as my hair but just no greys! So at least that is a positive eh!
My head is really sore at moment so I don’t think I’ll be long before it falls out.
Ive got a couple of scarfs and hats to wear around the house, as I am not sure how long I will keep the wig on for. Hopefully though we have seen all the 30c + weather and it will start to cool down, not sure how comfortable wigs are in the scorching heat.
Let us know how you go.
Im to sure where you live bit I went to a fab shop in Ware, Herts. They are really good and they have loads of different styles and colours and if they don’t have it they can order it in. I took my mum with me for an honest opinion.
For some reason I was also fairly anxious about it, especially when I had to decide on the one I wanted.
i went for something that was almost the same as my current cut.
Are you getting the wig on the nhs? Mine was part paid for on prescription, think that depends on the hospital you are under. I’m with the North Middx.
Good luck with the wig hunting.
Well I’m now on day 12 of my first cycle and have actually had a fairly reasonable week, so much better than week one when I was extremely nauseous and sick a few times. I’ve been tired but have gone out for a walk everyday - sometimes it has been hard to drag myself out but so worth it in the end. My throat is sore and gums really delicate so I will need to find a suitable mouth wash. Off to see ONG on the 15th or check I am all ok for round 2. which will be on the 20th. (Started 30th July but sneaked over to the Aug starters!)
I now have a fab wig that I think I will be wearing sooner rather than later.....my hair hasn’t fallen out yet but my scalp is really sore to touch and weird sensation. I am sure hair will be on the floor very soon!
I know it sounds vain but I am dreading the hair loss, I only have short hair but it is part of your identity etc. But I have to keep telling myself it is for a short time......
Hope everyone else to coping ok with the treatment. Good luck to those are are due to start over the next few days.
We can and we will do this....
Hope you are all ok and coping, particularly Georgie-hope you get home soon!
Day 10 here -still some bowel 'issues', sleeping better, appetite and taste returning. Very dizzy and off balance and overwhelmingly fatigued today. Hit me like a brick wall in fact.
Hoping next week life can return to normal for at least a few days...fingers crossed.
Hair is feeling thin and delicate but still there for now!! Dare not blow dry in case it all flies off.
onwards and upwards
thinking of you all
Georgie, I used my time in hospital as an opportunity to read books. A luxury I usually rarely have time for. It feels hard at the time, especially when there are sick people around you. The lowest my neutrophils ever got was 0.23 but a friend had them close to zero (I think 0.04) and they bounced back and then she started taking LifeMel honey daily and they weren't a problem again. Sending hugs. Xxx
Thank you for your support everyone. My neutrophil score on admission was 0.0!
I do long for for my own bed and home, but feel safe here for the time being. The antibiotics are making me feel sick though so I am going to have to chase a nurse again... everything takes such a long time here, an d there's no one to talk to.
I will take a peek at your blog Mai7.
Georgie, sorry you have ended up in hospital. This happened to me 5 times due to high temperature. It's essential though for sepsis monitoring as chemo leaves your immune system vulnerable. If it's your neutrophils they usually won't let you out until they are back at 1 and won't give the next chemo until they are at 1.5. I did 8 rounds of chemo and finished active treatment in January. Life it good again. Hang in there. Xxxxx
Heres my blog which has lots of chemo tips for anyone that hasn't seen it. http://lifeafterlola.blogspot.com/
Best wishes ladies. Xxx
So after temp rocketed to 38.4 last night I took the advice and came to Acute Assessment Unit.
On fluids, I think IV antibiotics and am awaiting the next set of results to see what is next. Now I'm actually in hospital I feel safer, but I do wonder to myself why I am putting myself through all of this.
Hi Ladies, been reading your threads about your first FEC and it really brings it all back to me (even though I am only 3 down as yet). My first FEC I got a sore throat and mouth, ONCs said to use Corsdyl mouthwash (watered down if need be as its quite strong) or cooled boiled salt water, the salt water really helped, do it every time you eat. I also use Biotene mouthwash (from Boots) which is especially for chemo (and other conditions), its moistens your mouth and is not too harsh. Biotene also do a toothpaste too. I found I didn't get the sore throat on my next cycles of FEC, and never got ulcers, just the dry white tongue with lack of taste and a sort of burning feeling, like I'd drunk/eaten something too hot. Over the days it does lessen and by day 11-12 things were coming back to normal. As for sickness, I had the as and when sickness tablets to take and did take them as I needed, I found eating crackers helped stave the sickness. Sleeplessness is often teh steroids, make sure you don't take any after midday (advised to take them morning and lunch) as this helps with the sleep. That does pass too as you come off of them. Be prepared for an emotional rolllercoaster as you come off them though, thats happened to a few of us but again a couple of days later is goes away. As for tummys and toilets problems, I did get constipation and was advised to take sennokot before bed, it helped, then had a bout of diarrohea but that passed to (exuse the pun!) you can take something for that if its really bad, but see if you can ride it out for a little bit as you may end up getting really constipated. Keep drinking lots and eat prunes for breakfast and lots of fruit. I also take Manuka honey in the morning, its supposed to help with antibacterial properties etc. Not sure if it works but worth a try. Also if you can stomach it, I have been advised to drink carrot juice, beetroot juice and apple juice. Have to day I cant bear beetroot juice but mix carrot and apple together and its quite nice, helps with vitamins and those bloods cells... worth a try too.
I may have mentioned some of this on an earlier thread so please excuse me... chemo head does exist!! Take care, rest up when you need, but do try to have a little stroll, even if its round the garden as I found this really does help, you can go stir crazy with this thing!
Temp is more controlled thanks Fran......
I have been taking more notice today. And I will go if necessary.
Have sore throat and mouth too and the nausea isn't really going away. Can't imagine eating a normal meal.
My GP is supposed to be calling tomorrow - just want them to be aware and responsive to any needs I have that the hospital won't cover. They say GP should provide sleeping stuff (which I was on before since diagnosis) but GP says not to call them for things. It's all very political. I had called GP on Monday for advice but they said that the earliest a doctor could even speak to me was tomorrow..... there's something wrong!
Just wondering as well, what do people use for thermometers? I bought a digital one you put in your ear, but am thinking I might get a no contact one you just zap yourself with? My ears are a bit sore using the ear one all the time, and the readings differ from one ear to the other😫.....
Been quiet but been following your posts and your trials. Its hard isnt it.
Been sleeping very bad which has compounded the exhaustion. Think that first night really knocked me out and set the scene for the week. I’ve arranged to see the oncologist next week to see what we can change next time.
At the moment I am suffereing from somach cramps at points through the day. I’ve left a message with the onc nurse to call me but wondered if you had any tips? Nausea has lessened massively, its the tummy ache now, like bad period cramps. Loose bowels but not diarrhoea (god! Am I really sharing this 😖)
Hope everyones day is an improving one 👍🏻
Yes you were all right about last night in that I should have called in about my temp and today I am packing an emergency bag ready to take with me if it should happen again.
I think I just panicked about the consequences and possible false alarm - sadly our local hospital is always full and......... I will go if there is a next time. Glad you are home Fran. Did they give you antibiotics?
Hope Fran & Georgie have been ok overnight and you have both been tucked up in your own beds!
Day 8 -First night for me where I wasn't wandering at 3 am ....hurray!
Did feel the need to sort out my freezer at 6.30am though-what is that all about?
hope you ladies have a good day today