I’m sorry you were in A&E but glad to hear that you were put in a private room - that’s what I told would happen but good to hear that it did happen - it’s such a worry with so much going around...
thanks for the tip about not shaving the hair completely- I’m going to have the cold cap but got wig and beanies just in case and the lady that sold me the wig did say that best not to shave to prevent (or at least reduce) itching from the wig.
All to come for me, first chemo tomorrow 😬, after having to leave the chemo unit on Thursday (15 minutes with the cold cap running) because the results of one test not ready yet.... xx
the good news is I only waited a few minutes before being called into triage when I was at A&E so at least I was in a private room for most of my stay there. Told them I was having chemo at reception.
Can’t believe only just checked my pubes after reading some of your comments and I’ve got a bald patch. Didn’t even notice them dropping out!
My breast care nurse and also the wig consultant advised me not to shave my head once my hair starts to fall out as they’ve seen people get skin infections as a result. I had been considering it beforehand as my hairdresser offered to do it and open the shop up especially for me so it was done in private.
Hoping to get out for a walk this afternoon too.
Hugs to all,
Hi Everyone and Hi Tracy
so sorry to hear of your visit to a&e.That must have been very worrying for you ....glad to know that everything was ok in the end.
My 17 year old daughter has got a cold so we are dodging each other around the house ...she is a typical teenager so spends a lot of time in her room anyway...even so will be going around the house later with anti bac wipes! Chemo 2 next week and would like it to go ahead if possible!
Hair is falling out at a pace...may get the clippers on it later. I have to admit to it being horrifyingly fascinating seeing how it is shedding! Parts of my head feel tingling and slightly sore and not nice to wake up with hair all over the pillow....glad I sorted my wig and hats etc
Hoping to get out for a walk this afternoon.
Take care everyone and feel better soon x
Glad you ok after visiting a and e.Sounds hideous.
i know what you mean about the nausea and tiredness.im still only able to drink Cold water and eat white toast.My mouth has been so sore despite sweets,tried pineapple and am brushing teeth with soft brush and using biotane mouthwash.
i can get some relief from ice lollies.i havent been out other than to beach since my surgery as I’m high risk for catching stuff with my asthma.
my throat feels scratchy and sore so keeping an eye on that in case I have something from my little boy (despite huge lengths to prevent).
the Coronavirus is making access to hospitals much more of a hazard for us now so hope I don’t need to use a and e.Even going in for bloods and chemo is scary as you have to walk through the hospital and sit with others.
anyway hope everyone doing ok can’t wait to feel bit better
Hi everyone, sorry I’ve been a bit quiet this week. Spent 4 hours in A&E on Monday (day 6 of cycle 1) getting my heart checked out after having palpitations through night. Luckily everything was fine but I left with sore hands after 4 attempts to get blood. In the end a senior doctor had to use a scan to find a blood vessel and even then it was hard getting blood but they wanted to check my bloods as I was on chemo. Everything was fine with my bloods too thank goodness.
I haven’t started losing hair yet but my scalp feels tender. My taste buds are taking a little getting used to now. I used to love Nescafé cappuccino Irish Cream and Unsweetened but now they taste disgusting. I’m only managing about half a cup of tea or coffee at a time. Flavoured water tastes okay. I’m craving carbs in particular toasted cheese sandwiches.
I’m now on day 11 of cycle one and have managed to catch a cold off my 5 year old daughter despite all my precautions. Not too bad at the mo. The worst for nausea was in the early days. The tiredness has been surprising this last week. I’ve stayed indoors days 7-11 as I knew my immune system was at its lowest and didn’t want to take any chances.
I’m still waiting for an appointment to get a PICC line fitted and worried in case they don’t get it done before my next chemo. There’s Coronavirus though in Carlisle which has the hospital I need to attend to get it done. I’ve got a meeting scheduled with the oncologist nurse on Monday so hopefully she might be able to chase it up for me.
Hugs to all
Yes it can be a bit of a surprise, it’s a case of hair today and gone tomorrow. If you ever need a laugh lesley who was on nov17 Chemo thread after our oct17 thread washed her wigs in the bath and posted a photo and we all 😂🤣😂🤣😂thinking she had shed very long pubes in the bath 🤣😂🤣😂🤣well you have to laugh at it all really through chemo it does help 😁 and you will all share your tips getting through 😁 it was our meesh on our thread who opened up the 😂🤣😂🤣🤣for us all in the early days with her bum buttering tips when we all had piles 😂🤣😂🤣😂proper legend 😁😁 I know it’ll seem like a way off but get your meet up planned, it gives you all something to look forward to and it did seem to come round quick once we’d arranged ours 👍 💕💕✨✨Shi xx
I am just astounded it has happened so quickly! I assumed the hair loss would start from the head down 😂😂
Ah the pube shedding, you’ll need to be careful if you hover above toilet seats when out (avoiding germs from strange loo seats) because you’ll find wee goes all over the place with no pubes 🤣😂🤣😂 who knew 🤣😂🤣😂🤣 💕💕✨✨Shi xx
Probably far too much information for a Saturday morning but...my pubes are coming out in clumps! I didn't expect that at day 10! #silverlining
Have a good day all. Helen
I had to look that up. The list of side effects goes on somewhat doesn’t it? Sounds horrendous. Sending hugs. I do hope things ease off for you and it gets easier. I realise this might be a vain hope but here’s hoping. Sending hugs 🤗
Yes I’m on soft bread and chicken breast 🤪 Not my usual choice at all.
So sorry to hear about the hair. I’m dreading it 😟 But I suppose as with the rest you just have to go with it. I will get some nice beanies too.
Hope the next session goes okay. Sending hugs 🤗
thank you ♥️
this is reassuring for me as it’s such a change to what we normally eat.
yes the constipation will be an issue unless I’m on it soon.I have lots of prune juice in fridge ready to start and good old Movicol.
Sorry to hear about the hair coming out I dread it even though I know it’s coming.
i just keep telling myself I never chose this and have no choice.I do have my lovely wig and some beanies though.
good luck for cycle 2.One more down for you that’s brill.yes stock up on the carbs!iim definitely doing that.
lots of hugs
good to hear you not too rough that’s good.Long May it continue
im having FEC every 21 days (3weekly)
sending hugs x
sorry to hear you have had a rough few days. I found white carbs the only thing I could manage for around 5 days; plain rice, pittas, plain pasta with butter, chicken and bananas. Of course eating all those carbs can also lead to constipation so I drank loads and ate dried apricots and prunes and cold pineapple from the fridge which was lovely to take away nasty taste in mouth.
This phase hopefully won’t last too long and you’ll get your appetite and energy back.
I have my 2nd chemo next week so will once again be stocking up on the carbs!
My hair is shedding now...got to try and stop twiddling it as it comes out in my fingers! Pretty sure I will have lost it all in the next couple of weeks.
Anyway, hope you feel stronger each day xx
thanks jowels. I don’t think I’ve been too badly affected so far. But how are you feeling now?
Apologies if you’ve already explained but how often is your chemo?
I know it’s so odd isn’t it!
my husband is getting me some white bread today to try toast as I can’t face my usual seeded stuff!
thank you I hope so too.
hope you are ok too xx
Sorry I’ve been a bit quiet
started weekly paclitaxol.
apart from the cold cap it went okay. Feel washed out now and have a sore throat. Don’t know if I’m coming down with something or it’s just the side effects. Don’t have a temp or anything so just drinking honey and lemon and sitting on the sofa. Can’t face anymore tv. 🤪
Sending love and hugs to you all. 😘
Hope you are feeling better and the weekly cycles are kinder to you.
sounds like you’ve had a really tough time.
So sorry you’ve had such awful side effects. You really do seem to be wiped out. It’s funny buts it already changed my eating habits. Soft white bread. What’s happening to me 😮
I do hope you are past the worst of it. Sending love
So sorry it was postponed. What a nightmare when you get yourself all psyched up for it
i found the cold cap really unpleasant 🥶 for the first 10 mins. I was lucky enough to have someone with me to massage my legs and distract me. Tried breathing exercises which helped. After that it was fine. A bit heavy at first and then I just fell asleep 😴.
I am going to keep going with it if I can and if it’s worth it.
good luck to you and hope your next session all goes to plan
C virus is a complete pain isn’t it. I was really looking forward to starting the first support group meeting last week but they have all been cancelled for MONTHS 😱
thanks for this,felt such a relief to think I can eat and feel some way better soon.So pleased to are feeling better Cant imagine drinking a hot drink and I’m asking for ice constantly!
its also very encouraging to hear that you are doing things 😀
you have a busy day ahead so hope it all goes to plan. Don’t know about you but feel like I want to be in a germ free bubble! So hard with corona virus and the pressure on our nhs.
i got my wig on Monday and was pleased with it.Nurses say my hair will be gone soon so another hurdle to come I know.
i chose not to cold cap in the end after much thought.
Good luck to everyone who is though hope it works for those that are.
That’s EXACTLY how I felt Jowels! And it was hard! But after a couple of days my appetite was back with a vengeance, and I managed coffee and everything else I enjoyed before chemo #1. I had a bit of brain fog too, but this week I did some work and pottered about. A good week! Not sure how I will feel when the chemo goes to weekly though, but I will cross that bridge when I get to it.
Today, three hospital appointments - lympodema check up, wig consultation and dressing change/flush/bloods. I am day 10 after chemo and they say your white blood cells will be at their lowest.
I hope you have a better day today. I felt really crap for two days, then just crap (but eating) on day three, then just brain fog a couple of days after that. Helen x
thank you all for the wishes and tips - I might try the cap again (when they eventually call me back) and go with the flow - while washing hands!!! Coronavirus situation scaring me.....
Fingers crossed for today Julianna. No advice for Hickman line. I would ask them. I have a PICC and they have given me a protective sleeve for the shower. I assume eventually you will be able to get yours wet?
I had the cold cap on my first chemo. It’s not so bad. Yes very cold as you would expect, but you do get used to it. I am not sure I will continue though as it just prolongs my treatment to 3 hours, when the chemo is only an hour. And I am not too precious about my hair. If I am going to lose my brows and lashes, I might as well go the whole hog! So I am umming and arring at the moment. I have a wig consultation today, and I had my hair cut into a short bob yesterday which I love 💕
Anyway let us know how you get on. Have a good day all 😊 Helen
how we all doing?
i am day 3 of first cycle and I’m not going to lie,it’s been a tough few days.This is the first time I could type a message.
The first side effects surprised me and my husband and son as they started 3 hours after getting home.Retching,vomiting only twice but the nausea is something else.I am on Emend,which I know is gold standard thank goodness as I’m unable to have the ondandestron as it interacts with my Asthma meds.
I also have had my steroids and have metaclopramide that I’m also taking.Have zero energy and am only getting up for the toilet and trying to keep doing few of my arm physio from my surgery (not easy to do when you are wiped out).
Oncology say this should be the worst of it and I should pick after 3-4 days.
food wise- managed 3 crumpets since Wednesday,sipping iced water, cordial and a few queasy drops for the taste in mouth.Going to try an ice lolly today and see if this helps.I also have some ginger ale with the lid off to get rid of fizz.Hope this may help also.I eat so healthy normally so it’s so odd not being able to tolerate anything I usually would love.
my advice for anyone about to start is sleep,sleep, sleep and do anything you can to help relax -I’ve got podcasts,music,meditation and box sets.Im finding that if I just take it hour by hour that seems to help.Ive accepted that this is how it is for now but another day closer to getting through it.
Hope you are all getting on ok.
sending hugs to you all x
so sorry you couldn’t get started on your chemo.Such a disappointment when you are all set to go.
hope you get started soon
big hug x
Yep, Hickman line ok, local anaesthetic given, the nurse was amazing!! What I’m struggling now is showering and not getting it wet - anyone has any tips with this?
After having tried the cold cap in action I’m wondering if I’ll go through with it, felt rather sick at some point, but I hear that you get used to it - the worst is on the first 10-15 minutes, is that right? (For those that are cold capping ;-)) xx
OMG Juliana, sorry to hear this.
No wonder you are frustrated. All that anticipation, not what you need!
How did the Hickman line go? Did you have a local anaesthetic?
I’m just back from hospital as due to have had my first chemo today. I was ready to go, 10 minutes in with cold cap running to then be told that they didn’t have a test result report and they would not be able to continue today - really frustrating 😞 hope to hear from them tomorrow xx
Best of luck for tomorrow Julie.
I imagine that we will receive more info from our hospitals as the weeks go on regarding coronavirus.
My oncologist’s secretary rang today to sort a telephone consultation rather than a face to face appointment next week. Suspect more of this will follow and I for one am happy not to have to drive in, pay parking etc. Still got to have bloods done and next chemo next week!
All the best x
Hi ladies , it's all getting a little bit mad with this virus going round !!
After having my first chemo session cancelled lat week , I am due to start tomoro !! At long last. I'm eager to start but also worried about compromising my immunity. As I'm sure we all feel at some point. Trying to stay rational is easier said than done.
Hope everyone is keeping themselves safe and have minimal side effects.
Every single post on here is inspirational and reassuring. So I'd just like to say thank you.
Hi wildspur and everyone much appreciated for your kind wishes.
ah no it’s a nightmare with little ones isn’t it. I know exactly what you mean.
Hope you are getting on ok and your son picks up soon.Everything seems to happen together doesn’t it.
Hope everyone is getting on ok.lots of hugs x
Good luck Jowels. It certainly isn’t as bad as you think it will be. Big hugs 🤗
I have my six year old off school today with temperature and cough! Although he seems to have perked up now he knows he isn’t going to school...I am trying not to touch him! 😂😂😂
So I’m having a Hickman line inserted tomorrow in preparation for my first chemo on Thursday.... I’m finding that the anxiety is building quite a bit now so have been going to the gym and it does seem to help....
yep, Coronavirus outbreak is worrying me too - we had training sessions on hand wash in my house 😉 xxx
Best of luck for tomorrow Jowels. I found the anticipation much worse than the reality so hope all goes smoothly for you. let us know how you are doing xx
hope you are all doing ok and managing the side effects ok.I know we all at different stages of our March cycles.
i got my wig today -sureal experience to add to all the other we are having these days.Im pleased to say I am happy with it.
im having my first cycle tomorrow and am worrying about the corona virus on top of being immune compromised from chemo.But all we can do is to keep ourselves as safe as we can-difficult with young children.My house is like a hospital ward as it is (typical nurse!).super prepared which is good.
i just want to start it now and will think once I leave hospital tomorrow I’ll be reminding myself I only have 5 more.
anyway sending you all lots of hugs and well wishes
I think advice alters from trust to trust, my onc told me no matcha powder, Rose hip, turmeric, green tea. I just always checked everything with my unit first just to be safe 😁 Anyone not getting on with your antisickness meds, let your teams know ❤️Pace yourselves keep the water flowing through too helps liver and kidneys as they can take a battering during chemo but your oncs will keep close eye on them too 😘💕💕✨✨Shi xx
Just being a mother hen here, please check with your units about any supplements etc to ensure it’s not interacting with the chemo ❤️ You don’t want anything stopping it from doing what it needs to do ❤️ 💕💕✨✨Shi xx
Hi everyone, the thought of a bacon butty will keep me going today. I’ve taken to bed with nausea but luckily hubby has the shopping and kids birthday party invite sorted for this afternoon.
I had my wig consultation this morning. I’m now the proud owner of a medium brunette pixie style wig. I decided I wasn’t ready to embrace my inner grey despite my hair being salt and pepper brunette/grey naturally. I did try a couple of grey ones on and they didn’t feel like me. At least with a brunette one people might assume I’ve just had my hair dyed. I’ve also bought a couple of different hats for days when I don’t feel like wearing a wig. Nice and soft and match some of my outfits.
I might try more white carbs to see if that helps with the nausea and lack of appetite. I only managed one mouthful of coffee this morning before deciding it was making me feel too yucky. I’ve only got one more day of anti sickness meds so might need to see if I need to get some more or if the nausea should stop by then. Probably wishful thinking.
I’ve set up a private blog using the Caring Bridge website because I was finding it too much updating people individually and at least now I only need to post one update and I can control who has access to it.
Thanks everyone who shared your PICC line experiences. I’m not feeling quite as scared about it so it really did help.
Hugs to all
How are you doing?
White carbs was the order of the day for me too for around 5 days. Then thankfully on day 6/7 taste buds back and started to eat normally again and enjoy what I was eating ... so hang on in there!
I am day 11 since first FEC and enjoyed a bacon butty this morning which would have turned my stomach this time last week! Plus I managed over an hour of gardening today.
As someone said, chemo is an endurance test and I guess we all have to listen to our bodies and have the rest and the white carbs as required! Funnily, I too cannot stomach the idea of coffee!
Take care and feel better soon xx
p.s great idea doing a blog! I feel like a broken record at times having to give all and sundry an update on my symptoms 🤣
i didnt have an xray after my picc went in. He just showed me the scan pictures afterwards. Said all was fine.
re multi vitamin pills ?? speak to your chemo nurse/doctor ... i was told to stop all my vitamins once i started my treatment as some can react with the chemo.
mini mad xx 💖💖
sorry to hear about the nausea.
ah I’m dreading the nausea -yack
after I was diagnosed I had a lot of nausea due to having to take morphine prior to surgery and I didn’t eat for days.
i have queasy drops,mints,booked sweets and chewing gum along side rich teas,crackers and rice cakes at the ready.
Im only hoping I have a good combination of anti emetics as I can’t have Ondansetron as it interacts with my asthma meds -honestly you couldn’t write it!
oncologist said she will sort so hope so.
i don’t know if it will help anyone but I’ve been drinking peppermint tea instead of tea as it settles my stomach(good for digestion) and is calming so plan to keep on with that.
Sending hugs to everyone x