Re Paclitaxel ....doany of you get sore, aching muscles at all’? I find under my bra straps and along under my bra at the back is very tender.
also I get a reddish arm on the 3rd day which I thought could be cellulitis, but don’t think so now as it goes away...but my arm muscles hurt if I do too much.
be greateful to hear if others had the same?
Miss Green - you look great - well done!
Macneech - what a shame about your cruise - but great you got money back and you can look forward to rebooking. I have claimed on a critical illness policy - was paid within a couple of weeks - with Legal and General.
Flora hope the aches with the injections are not too bad - have you done them yourself? I have to get hubby to do mine - just can’t make myself do it.
Juju- good luck on Monday hope it goes well for you.
i’ve been feeling really well this week but think I have overdone it a bit, walking and cleaning and I’m really tired and achy tonight- planning a v lazy day tomorrow.
Have a good weekend everyone xxxx
MissGreen. Took a leaf out of your book today and went for the shave. After trying to wash it yesterday and ending up with more hair on my hands I gave in. Don't look as good as you but I feel better now it's done.
Another plus is my bloods are back up . From being 0.2 on Monday they are up to 2 today so chemo number 2 due on Monday.
Wee Burd any news on a date for the Hickman line? It will good to know you can get your treatment without the fight for a vein.
Have a good weekend everyone xx
I'm taking Kefir and have started making my own. I haven't checked with the oncology team, to be honest, but I have only read good things about it. I haven't had any constipation on this chemo round so far, although I am also taking some Sennokot just to be sure!
Gave myself my GCSF injection yesterday, so a bit still and aching today. But so far, things are OK on the abraxane. Early days.
My onc is fine re kefir, apparently it has a wider range of bacteria than probiotics, or maybe different ones...my hosp pharm said no, but onc said go for it...so ask them XX
Hi all, hoorah Wee Bird re line - atlast x
Good news Flora.
I am day 2 following FEC 2nd round.Came home fully armed with all the antiemetics under the sun yesterday as very sick like you chrissy68 first round.Felt a bit nauseous on and off yesterday and this morning but no vomiting!Managed to eat something tonight and feel ok.
Thought some of the symptoms last time may have been made worse by cold cap.,Was all prepared to go for cold cap on round 2 but literally lost fringe and front of scalp day before! - so have given up on it.
Wore wig yesterday and wearing woolly hat in bed today ( have a sleep cap but makes me feel like a chemo patient - still adjusting ).The rest of my head is uncomfortable and feels prickly so will have yo have cut/ shave soon😕
Thinking of everyone - we too had to cancel 2 week cruise to the Canaries (due to sail tomorrow) - one positive in that we got all our money back all but £200 excess.Once medical cert from gp(£30!) Sent to virgin- insurance money in the bank in 48hrs! P&0 not so prompt but got it.
Has anyone claimed critical illness insurance- I have a claim going through with Aviva which if successful may pay our mortgage off (£120,000).They are currently requesting evidence/histology from BCN but not ruled it out.
Reading some of the old threads (Jude 51) - eating Kefir/ bio yoghurt I understood to be 'no no' due to live bacteria.Any thoughts??
So after a good positve day yesterday I came down with a bump. Woke to find my bed covered in hair and everytime I tried to style my hair more just fell out. This evening I decided to take back control so I got the clippers out and shaved it off.
Jude51 ........ Suggs was amazingly articulate and funny. He tells a good tale.
Flora - brilliant news !
Wee Burd - Sorry to hear you didnt get the chemo but sounds like a plan in place to prevent any more delays. I have a portacath which is very similar - bit uncomfortable getting it done but so pleased i did. And good to hear you had a bit of time out - lovely bonus !
Miss Green - I adored Madness as a teenager, bet Suggs was fab !
Macneech - hope you are doing ok.
Big hugs to everyone xx
Wee Burd how did you get on with your bloods? Did you mange to get your treatment? I cant believe that they wount give you a picc line, it would make your life so much easier and is easier for the staff too.
MissGreen. I would do anyting for a cuddle right now, either from my Mum or my hubby but they both have bad colds and my neutrophils are down to 0.2 so I am having to keep away from them. I'm going to work just to keep busy, I work in a small office with only 6 other people and luckily everyone there is well at the minute or I wouldn't even have that distraction.
My hair is also starting to fall out, just a few strands at first but now getting worse, I know I need to have it shaved but haven't quite worked up to that yet.
Chrissey so sorry you couldn't have your treatment, I have my next blood test on Friday, for treatment on Monday, hoping my levels have gone up, even splashed out on some Manuka Honey as I read an article to say it can help so thought I would give it a try. Who thought it would be so upsetting not to be able to have chemo!!!
I know what you mean about cancelling things and not being able to plan, we have just cancelled a cruise we had planned for our 25th wedding anniversary in July, its so upsetting, and frustrating, we have this crappy disease and it takes over everything. Sorry, feeling pretty sorry for myself at the minute, just feel low and tired.
Bibi, enjoy your wedding dress shopping, it will be nice to have something to focus on,
Hope everyone is keeping well, take care and we will get through this. xx
Good morning everyone
Good luck today Wee burd and Macneech - hope it is straightforward and you recover quickly - take care x
Chrissy I hope you don’t have to wait too long before you can go ahead - and I’m sure your family will make your birthday special for you xx I know what you mean about feeling like you can’t plan and your life is on hold- I have dates ticked off on calendar of when chemo should be but obviously that could change if any holdups. That feeling of not being able to plan ahead is very frustrating and was getting me down last week - when I was feeling pretty awful anyway after chemo , but having now returned to planet Earth I am trying to be positive and just plan things for these weeks when I feel good - meeting friends, going for walks etc.
Miss Green - Mum cuddles would be nice but lost my Mum to cancer 22 years ago so I look forward to daughter cuddles. - the highlight of my coming week is looking forward to Sunday when I am going wedding dress shopping with my girls - my older daughter is planning her wedding for next spring - very excited 😆
My hair seems to have stopped shedding again and I’m planning a trip to hairdressers on Friday for a trim - had it cut into a short style before first FEC and I love the style but it needs a tidy up. So hopefully going to continue with coldcap next week 🤞 and hope it just thins but still looks OK.
Thinking of you all going through treatment and recovery this week xx
I did something similar, Chrissy. Bought a new lady shave thingamy just before treatment as my old one had broken. Since I had a trim, nothing more has grown! Another light of the lack of hair thing - less trimming and shaving to be done!
Fingers crossed for tomorrow, WeeBurd.
And we all need cuddles, that's for sure. I hope everyone has a source for them when they need them. xxxx
I just wanted to say thank you for your comments you are all so lovely.
i feel a bit better today have just been to Sainsbury now don’t laugh have bought a lady shave for my bday but obviously for when it starts to grow again !!
i know I’m crazy.
hi Jude oh I’ve gone sideways ! Sorry don’t know how to change back. Anyway it’s Dudley group of hospitals called Russell’s hall hospital.
Miss green yes I’ve had to shave mine off and went a bit short I look like a skin head! I scare myself in the mirror ! But the wigs out now but it’s not the same is it. Good luck x
weeburd- sounds like u having issues with bloods do they not do picc lines routine at your trust too?
flora thankyou re bloods from node arm I feel the rules are broken when needed but what’s the point of having rules otherwise.
good luck to everyone I’m making the most of feeling normal again doing house work and sweeping up outside, never knew snow could make such a mess !! Xxx
Oh Chrissy i really feel for you and i would even go to say it angers me ! Sorry, i know that doesnt help you at the moment but i find it so frustrating. I know that everywhere is different but this is a prime example of why these particular interventions eg PICC line/Portacath and C-GFS injections are there to use. Its stressful enough having chemo so any delays just make it even worse. Do you mind me asking which hospital/trust your are under ? What are the plans now for your next treatment ?
Really hope it gets sorted out soon and that you get to go away or at least have some sort of time out with your family - big hugs xx
Oh i'm so sorry Chrissy. I know i've been told they can take from my node-less arm if they have to, but always try not to. I actually didn't realise they took this precaution with SNB too. I had full clearance on my right arm 8 years ago, and SNB on my left in December, so we still use my left side. Its just about standing up to it at the moment.
I can only sympathise with the delay causing problems with the few celebrations and things we're trying to look forward to. I had planned a few things for in between treatments and it is all up the spout now. It makes me sad too. I hope you can at least get out for a meal, if not a few days away. Big hugs xxx
well I went to hospital yesterday to get bloods checked as last Friday I was told neutropenic and if ok today I could have my 2nd FEC .
i was about to have bloods from left arm when lady said are you having chemo today. She then said I’ll have to do right arm, like you weeburd my right arm had sentinel node biopsy so this was a dilemma . In the end they wanted to put a cannula in left but I had driven myself there and had nothing with me as I was told have bloods and go home to await outcome. I was told never to have blood from right arm or blood pressure etc but they said I could have bloods. It was really scary but had no choice. I even asked them to take from my foot!
anyway after all that I went home at 11 rang and the neutrophils were 1.46 and needed to be 1.5 so after all that I couldn’t have 2nd FEC.
They are really not keen on pic lines at my hospital and I really don’t want this to happen again.They also don’t routinely give the injections so the whole process is delayed. I know it’s no ones fault but it is my 50th on 1st April I have cancelled so many things and wanted to just have a tiny break away on 5th and 6th with my hubby and girls but won’t be able to now. He works shifts and it’s been really difficult. Life sucks!
Dear all,hoping all goes well weds for us having another go at it! My bloods fortunately came back ok today and some shrinkage of my lump already! Whoop whoop. Also have a mega selection pack of anti sickness pills lines up for my take outs weds 😁.
Wee Bird- definitely ask for picc line - mine went in the day before my 1st fec no trouble at all and has been brilliant since.visit to the hospital every week but distict nurses will also come out and flush it if it is easier for you.
Big hugs to everyone xx
Hi Wee Burd and Miss Green, I'm from the Oct thread and recently had my last chemo. Just wanted to let you know that I had a PICC line, which I was nervous about having fitted, but I didn't feel anything when it was done and it did make having chemo a lot easier. The only downside is that you have to go to the hospital weekly to have it flushed xx
Do they put ports in at your hospital, I’m going for one next week. They don’t need weekly flushing and you can swim and do all the stuff you would normally do...they can be left in place for years if need be.
just another option.
Thanks everyone for the advice and hugs - sounds like it might be a good option if there are going to be problems in getting blood out.
When I read about PICC lines before starting they seemed scary and difficult but after that first treatment and today's experience I'm thinking it seems a lot less scary than possibly fainting every time I get a needle in my hand, or having treatment delayed because they can't get a decent vein. My friend's son is going through chemo just now and had a line put in and seems to be getting on no problem with it. And a trip to the nurse every week to get the dressing changed and line cleaned will give me something else to do!
I will ask tomorrow at the oncology clinic - especially as I suspect they are going to have to take more blood. If they could go to the other arm it might be better, but the nurse today said she can't use it because of the risk of lymphoedema after the sentinel node was removed at that side. At the moment I'm feeling a bit like a pincushion!
Wee Burd, hope you are feeling better now. Dont feel guilty, you neded to be checked out. I ended up in hospital twice with my chemo last time, once under my own steam and once by ambulance (my first time too) but they said I did the right thing. Your body is going through hell and needs a bit of a check up every now and again. And you also need the reassurance.
Will they not give you a picc line? I got one straight away this time as my veins are so bad and its brilliant. Im having to have blood tests every few of days at the minute as my neutrophil count (think thats what its called) is down to 0.2, oops, and if I didnt have the picc line in I dont know what I would do, its worth asking the question.
Hope everyone else is doing OK
Macneech, the inside of my nose went runny/bloody/scabby too after my first chemo. It healed up after about a week and a half, but I think it is a combo of nasal hair loss plus low platelets meaning any skin break won't heal well.
Oh Wee Burd, how scary. You did the right thing in getting checked out by the ambulance. Its amazing how you can feel well but still be at risk. I completely underestimate it all the time. And yes, itchy scalp will be your hair follicles reacting. Do you think they'll suggest getting a PICC line if they're having problems taking blood? We get pricked and prodded so much through this.
Kitty, I hope your little girl gets used to your new look. I don't have children but last time my niece struggled with it. She found me a bit frightening. She was 7 years old at the time. It was upsetting that my look was upsetting her. Difficult emotions.
Chrissy, I hope all has gone well for you today. Delays are so frustrating, but they do have to make sure you're well enough to take the next dose. When I had my reaction last Wednesday, before I'd even recovered I was asking if that meant it was all aborted again (it was) because I just want to get it in, done, moving on, over. I don't have any hair tips - my bristles are coming out every day (handfuls in the shower!) since I shaved it a week ago, but I have only worn hats out and about this past week so it isn't causing any problems. I haven't needed to wear my wig yet. My hubby left my hair about half an inch long.
Bibi, I'd definitely mention the hot feet to the oncologist, just in case. I wonder if it can be a sign of peripheral neuropathy? I think I have the start of that in my fingertips, and apparently the abraxane is more likely to cause it than docetaxel, so I'm a bit paranoid about it now.
MIssGreen, glad you've made it to work for a while.
I took the decision yesterday, after having a very low, emotional day, that I will not go back until after this treatment now. It was quite a tough decision for me, as I pride myself on not taking much sick leave and know that I'll feel great on some days, and then feel like a fraud. But it has lifted a weight and everyone has been mega supportive of the decision. It probably makes things easier for colleagues, as I'm not messing them about all the time and they can just get on with stuff. Even though I've just had a few millileters of chemo in the last 2 aborted attempts, I have still felt very shaky all week, and very emotional. So I think even a little bit of the chemo, plus the steroids and piriton have been affecting me, just when I thought I should be OK. We'll see how wednesday goes now. Third time "lucky"!!
Not a great start to the week - went to the GP practice nurse today to have blood taken but after Friday's escapade at the hospital there was so much bruising around the veins in my arm that she couldn't get enough of a sample. She then tried the back of my hand and I ended up feeling dizzy and faint again ( as per 1st chemo cycle when the cannula went in). She got enough there for one of the samples and a bit more for the second, but probably not enough. By that time she wasn't going to try any more, so I have to hope that it was just enough to be tested properly. I have an oncology appointment tomorrow to find out if Wednesday's treatment will go ahead. The thought of having more blood taken tomorrow is not a happy one. Neither is the thought of the treatment being delayed - just want to get it over with now.
Hope everyone else is having a better day. The snow here is gradually melting, and it's now gone that horrible wet cold slushy way. An afternoon cuddled up on the couch with the dog beckons! Keep cosy everyone!
Afternoon everyone- have been out for lunch - so good to be out and about and feeling good again 😊
Wee Burd that sounds like a scary experience- glad it wasn’t anything too bad
Macneech - yes Annabandana have some nice hats at reasonable prices
Chrissy - hope your bloods pick up and you can have you second round Ok.
Kitty - hair loss for me has been that it is thinning but no bald patches. After second chemo (FEC) it seemed to start shedding a lot but it has eased off again now and to be honest you can’t tell that I have lost loads it still looks OK - feels a bit rubbish though - dry . So I am going to monitor over next 2 weeks before next chemo and decide whether to keep up with the cold cap.
Jude - I was thinking about people who would have to travel this week for chemo - it must be awful to prepare for it and not get there. Let’s hope that was the end of the bad weather.
Ive just started with a bit of a cracked and sore patch at corner of mouth- am using the mouthwash hospital gave me and putting bonjela on it as that’s all I have today - anyone got any suggestions for something to stop it getting worse / improving it?
also have had some tingling in fingers and feet , and those hot feet at night keep returning- not as bad but still there. Don’t think there is much I can do about that except mention to oncologist when I see him again?
Good luck for anyone having treatment this week - take care all x
Oh crikey Wee Burd - scary times but you did the right thing. Its the one time you cant afford to ignore the symptoms even if they prove to be nothing. My head is still intermittently itchy so yes i would say it could be the start.
Macneech - i too am not a hat person but more likely to wear them than the wig. I keep having hot flushes so got a couple of loose lightweight beanies and a sleep cap from Deresina. Also have a couple of normal woolly hats to wear outside which have been invaluble. I also bought one 'smart' soft hat with a peak from Surburban Turban - pricier but nice to have something a bit different. There's also some info on the breast cancer care website - search for headwear.
Kitty - my son who is 13 actually prefers me now with no hair than the wig ! I imagine it must be so hard with little ones , especially girls - its such a big part of how you look.
Chrissy - thats always my fear especially when you feel so well. Fingers crossed they recover in time. Wonder if they will get you to have the injections next time ? My hair started falling out just at cycle 2 so it might be it will resolve itself very soon. Perhaps a thin soft cap underneath like a sleep cap might help ?
We've had a fair bit of rain here in Lincolnshire so snow virtually all gone thanks goodness - amazing how in the space of a few days its gone from crisis point to back to normal. I work in a hospital but have been so glad i havent had to brave the journey - some of the stories i have heard from work colleagues have been terrifying. Not sure if i had needed to get in for chemo this week i would have been able to get there !
Good luck to everyone for this week xx
Oh Wee Burd - scary stuff! I am a nurse myself but am paranoid that I might think I am ok and then miss something really serious so don't doubt that you did the right thing ( even with the 999)!
I am day 18 Fec today and definitely started losing hair yesterday - thought I would wake up with lots on my pillow this morning but it's not too bad! Have a wig and scarves on standby and woolly hat if stays cold ( not normally a hat person)!
Has anyone on here got a good hat website they would recommend ??
Still got a bit of a watery left eye but otherwise symptom free so like you trying to stay positive about round 2 next week ( we will get through this)! Xxx
Evening all - good to read all your posts.Amazing ladies dealing with a horrible time but trying to stay so positive. Fortunately I am having some good days.Day 15 after 1st FEC.Eyes a bit sore and nose a little runny - but that could be the weather??However losing some pubic hair! I suppose this( as some have said) may even mean nasal hair - explaining the runny nose??
Still holding on to my head hair however trying not to stress it- not itchy or painful yet ( I used the cold cap but not holding out much hope).
Not working - as am a hospital nurse ( exposed to lots of poorly patients with infections).Well done to those venturing back!!
Big hugs to everyone.
Poor you, Jude That middle bit seems to be when the chemo really kicks in and attacks everything, so no wonder you're feeling low. And I think mood swings are all quite typical. Not only are we on a ton of drugs affecting it, we're actually going through something rather major and rather horrible, so are allowed to feel a bit down about it now and then. I try and be as positive as I can be, but I do have a cry every now and then.
I'm still getting used to my bald head in the mirror. Well, I still have a Grade 1 GI Jane haircut, but the bristles are rubbing out a little more each day. I'm almost tempted not to bother with the wig. I haven't had to go out anywhere except hospital so far, so have just worn hats as no-one there cares about 'another' cancer patient. But my test will be when I go back to work next Monday/Tuesday. Trying to keep my wig on straight and chat to people at work for the first time with it on will be a test. I wonder if just continuing with hats might be better than faking it, IYKWIM.
My delays are frustrating, but I have been SO well cared for through it all. The nurses have seen it a million times before and react so quickly. Next week to try again, and in some ways I am really glad that I'm now going onto what seems to be a better (more expensive, more refined) drug that should (fingers crossed) go more smoothly from here. We shall see, but I've read good things about it.
Holy moly Flora - how frustrating !
Bibi - good to hear you are over the worst - i drank loads more this time and im sure it made a difference. I bought a Neom candle this week which is lovely - will look at the spray too.
Last 36 hrs have been miserable - exactly the same happened last time on day 5-6. Very shaky, nauseous and just awful, cant get comfortable and really low in mood. Despite everything i have said about the lack of hair for the first time it really got to me. I looked in the mirror and realised that i looked like a cancer pt...i bloody felt like one at that moment and that all this is really serious and very scary. Just kept telling myself it would pass and hey presto today is here and all is good...well a bit better ! I suppose i have been quite fortunate in that i have managed to cope with all the emotional ups and downs but that took me by surprise.
I also found last time that day 7- 8 i ate for england and really needed it. Today i've had 2 crumpets, fruit/yog and granola, a banana, 3 digestive biscuits, 2 chocolates , a bacon roll and hot chocolate with cream/marshmallows in the local garden centre cafe, 2 ginger biscuits and have just scoffed a packets of cheddars and a fruit scone...its only 2.30 pm !!!! I went out for a walk into the village with a friend and felt so much better for it despite the gale force winds - highly recommend the fresh air to get things going.
Take care everyone xx
Morning all - finally I have woken up feeling good - chemo effects seem to have passed - thank god 😊 Wondering whether I didn’t drink enough this time and that is why effects hung around for so long - will focus on that next time.
Had a lovely sleep after drinking Sleepy Tea and spaying pillow with Neom Pillow spray - kind gift from sister - can recommend- best sleep in a week.
Hope you are all feeling OK - Flora hope everything works out for you - sending you hugs.
Im at a point with hair as well trying to decide - it is coming out but not in patches just thinning- can’t decide what to do - may leave for a few more days and then see how it goes.
I have a pamper session booked for tomorrow but am wondering whether I will make it with all this bad weather - so far we have had v little snow (Midlands) but it is due tonight and tomorrow.
Have a good everyone , stay warm and be kind to yourselves.
Thank you for all your support.
ok I’m going to take the plunge and do it or buy some gorilla glue!!
i liked the comment about hubby having 3 women on the go made me laugh .
take care everyone let’s hope the snow doesn’t last I don’t fancy walking 4 miles to hospital tomorrow!
big hugs xx🤪