I haven’t been on here in a while, I have been catching up with everyone’s posts. Yes Kim, my 2nd chemo was the Friday after yours (which was also my 49th birthday - I don’t think I’ll forget it!) I feel that it has hit me harder this time, maybe because you aren’t 100% to begin with…? The side effects from my 1st chemo were managed better with the change of sickness drugs, although I have felt much more fatigue this time. I had a few pretty ropey days last week and yesterday started to develop a sore throat/tonsils to go with the sore mouth :smileysad: I took the first week as a lazy week and have just been binge watching the boxset of Grey’s Anatomy, which has kept me occupied :smileyhappy:
I had my hair clippered off and feel much better for it as it was so sore. I have wore my wig a few times, but generally wear a headscarf or hat.
Good luck today Sissy with your 3rd chemo, I too have a hot tub, I have a ‘limbo’ waterproof cover to keep my PICC line dry, I just keep my arm out of the water as I dont think you can submerge with the limbo on, the jets do help to sooth my aching bones.
Claire, I really feel for you, it sounds like you have really been through it. I hope you are feeling better.
Any tips for really dry mouth during the night??? Not sure what there is apart from lots of water!!!
Has anyone noticed there eye sight deteriorates just after each chemo cycle? I’m watching TV with my glasses on and I’m struggling to read wording?
Good luck to everyone having chemo this week and also hoping SEs aren’t too bad for those mid way and for those on there good week- enjoy (I’m jealous!!).
I’m doing ok, I’ve stopped taking one of the anti sickness tablets as I think it was making me wiped out, struggling with constipation, movicol doesn’t seem to have worked this time. I’m only day 4, so just trying to rest as much as I can when the kids are at nursery/school- thank fully they went back today!!!
Eye issues here too! I wear verifocals and having real problems getting them to sit right over my wig or under my scarf! Plus I’m sure my eyesight has got worse too.
Have dry mouth issues too and just drink sips of water which doesn’t help that much.
Xxx
There is a moutwash called biotine that helps with dry mouth they also have a toothpaste I use this for last toothbrush & rinse of the day it helps a bit. Been told boots do their own version of the mouthwash which is much cheaper but still works im not sure if they have a similar toothpaste. Biotine also have a gel which may help I havent used it.
You may be able to get them on prescription you could ring GP and ask as they are all quite expensive
Jen x
Hi All me again, eye issues maybe due to eyes being slightly drier but not enough so you notice itch etc some artificial tears may help they did for me , chemo can cause eye issues though they are very rare so if it persists please tell your doctors
Jen x
Thanks all. I’ll try and get some of the biotine, it sounds good. I find the first week is the worst, like everything!!!
My glasses get in the way of my wig too Kim! They are also really tight on my face, my head has swollen, not sure if it’s through weight gain or a chemo thing?? Then again chemo has made me put weight on!!! I’ve made an eye test appointment as I was thinking about replacing my glasses so the arms are narrower and don’t get in the way of my wig as much, but not sure if it’s a waste of time if the chemo is affecting them? Are you meant to have an eye test during chemo?
Whilst I’m on about SE does anyone else get a sore bottom of neck/top of back day 2 of injections?? Mine has just come on the same time as it did last cycle!!
I assumed that you probably should have your eyes tested during chemo incase they change again - my next appt is due in October so I’m hoping it will all have settled down again by then.
I think I’m going to have to get my glasses adjusted tho. I have 2 pairs so maybe have one pair adjusted for the wig and the other for my scarves!!
xxx
Claire, my next one is on Tuesday because Monday is the 29th and they said the pharmacy won’t to open to do the drugs!! Very odd as I’m sure it will be open for the hospital inpatients!! Oh well, I guess I get an extra day of feeling well
Xxx
Morning all!
I do hope I am better on T than FEC!!! I thought I was doing okish, until this morning (day 6!) when I started feeling really nauseous, I can only put it down to the anti sickness I got via drip at hospital that lasts 5 days has left my body. Felt rubbish!! Still troubled with constipation too, my body feels all over the place. I’m looking forward to coming out of this fog.
Debbie X
Hello all, am now day 3 of FEC 3, and feeling okish. Had a drama on the day of chemo though. Desire me drinking over 2 litres of fluid the Nurse couldn’t find a vein, so they had to get specialist nurse with ultrasound to find a vein and canulate me. I was booked into start at noon, but they were running late, so by the time it all got going it was nearer 2pm. The cannula area started to swell towards the end, so then there was a panic in case the chemicals had leaked into surrounding tissue, but three people checked it and managed to get a flush back, so they said to keep an eye on it. Swelling went down yesterday, but today I woke and it was swollen again, so called chemo line and they said probably phlebitis, but to visit GP. So went off to GP and he thinks not cellulitis or phlebitis, but posdibly some other infection, so he rang chemo line and checked with them, so now I’m on anti biotics for the next week. I hope it all sorts itself out as I’m meant to he having a night away next Thursday as a half way through chemo treat!
I know I’m lucky as my SE’s haven’t been so bad, but it just seems like one thing after another at times. I’m gutted that my veins have had enough already and I get so anxious at the thought of them trying to get blood out of me 3 more times and trying to put the drugs in 3 more times. I think I’m going to have to just bite the bullet and get a picc line. I think me imagining it is worse than what it will actually be like!
Sissy, sounds like a bit of a mare you had and so I thought I’d share my experience.
Chemo is very tough on the veins for sure! I had the silliest little lump that I pointed out to chemo nurse during bloods and assessment before FEC 3. She sent me off to see GP and she agreed with nurse that it was probably cellulitis and I was put on antibiotics for a week, delaying FEC 3 for a week. When I went for FEC 3, they couldn’t get the cannula in after a couple of tries and it was too late in the day for the vascular expert to do it, so they had me come in the following morning, have the vascular guys fit a PICC line and did chemo that afternoon.
Having fitted hurt a bit, but I cottoned on that the chap doing wasn’t fully experienced…don’t get me wrong, he knew what he was doing but was having a bit of a struggle with it and so the other guy who was there took over for a couple of minutes to get the tricky bit done and they the first guy finished off. I felt fine during and after my daughter and I went shopping and had lunch before returning for the chemo. So that went faster and was painless as there was no pre-warming and struggling to get a cannula in!
You have to get it flushed and redressed once a week (so twice between chemo’s) and need a shower sleeve but other than that is really is fine! The vascular guys said they think everyone having chemo should have them, and if they ever have to have chemo, they would have a PICC line from the start!
I am 99% certain that my little cellulitis (if that is what is is) was caused by the chemo damage to the veins and now on my second course of antibiotics for it, I wish I’d had a PICC line from the start…not that you are offered it mind you.
I do hope the antibiotics kick it into touch for you Sissy, they should do the job and you will get your night away!
Hi Amanda. Arm is still sore and looks a bit red and blotchy in places, though not where the cannula was put in. It’s more on the underside of the arm and my elbow feels really stiff if I don’t move it for a while. My BCN called today for a chat and I told her all about it. She said that anti biotics take around 48hrs to start working, so hopefully will see some improvement soon!
When I was worrying about chemo at the start I never thought to be worried about my veins! Apparently picc lines aren’t offered as standard in east Kent as they’re a bit pricey if you’re only having 6 chemo sessions. I wish they’d just stuck one in me from the start.
Claire, question for you about horse riding, have you been since your mx? I started riding again last year after a long break, and haven’t ridden since my diagnosis, I was trying to get back into it again but am conscious of upper body and arm strength as some horses are more head strong than others. Sissy xx
Good luck tomorrow Claire! Still feel cheated mine’s been moved to Tuesday because tomorrow’s the 29th!!! After feeling I didn’t cope so well with FEC 2 I’ve got more organised with food for this time so have bought in lots of healthy(ish!) snacks to keep me going throughout the day - nuts, tinned pineapple, cereal bars and have been filling the freezer with meals that will be easy for Mark to cook in the evenings when he comes in from work or I can do when I’m not so wobbly! I’m not going to get disappointed in myself for stopping in bed longer or getting emotional this time!! I am going to tell myself I’m half way through and the light at the end of the tunnel is getting brighter!! … We will see!
In other news, I washed my wig yesterday! I’ve worn it out a few times now - been to the pub 2 Friday’s in a row!! (Lime and soda only mind) and been thinking the wig looked a bit dry. So I went online to Simply Wigs and bought a pack of shampoo, conditioner, conditioning spray and gel spray specially designed for fibre wigs (Dimples). It arrived yesterday, complete with special brush, beautifully packed too with a little box containing 1 ferrero rocher chocolate! So I’ve given the wig the full treatment and it does look better. Looks sleeker and flatter, so I’m hoping looks more natural on although I’m more used to the way it looks now.
I still have a very thin covering of hair, but the overall look is one of baldness so I’m sure it will all be gone in a couple of weeks.
We’re getting there ladies - the March thread will be having their first dose coming up and here we are nearly half way through if not approaching our 4th dose!
Take care everyone - hope next week is good to you all xxx
Hi All
Good Luck Claire and Kim and anyone else who has cycle 3 this week. I hope everyone else is doing ok.
I am now day 10 and just starting to come out of the fog, it has definitely felt like a long time this time. Kim, I think it is a good idea to be as prepared as possible and accept that you are going to be in bed, at the time it feels forever but once you come out the other side it’s not. I do end up very tearful and totally helpless, my children are too young to understand but I feel guilty for not spending time with them, and the housework- well that’s another story, I’ll be catching up tomorrow!! I do feel over the 3 weeks I spend 7-10 days being poorly and the rest of timecatching up on house stuff, I really need to fit in something for me before cycle 4 comes along.
I have had some good news this week though…I went to see my BCN and surgeon on Thursday as I’ve had a pain below my breast and pain in my chest, I ended up having an ultrasound and my lump has reduced by about 40%, they said they couldn’t see anything to worry about and it is possibly just from things reducing. I have stopped wearing my underwire bra though and the pain has more or less gone!!! Is anyone else on this post having surgery after chemo? I’ve been researching quite a bit during my rough days about surgery and reconstruction and totally confusing myself!!
Best wishes
Debbie xx
Well done Claire! Half way through - Wooo! Really hope this one is a good one for you after the rubbish time you had on FEC2. Been busy cleaning, tidying and ironing plus drinking water! Making the most of this extra day I’ve been given so hopefully the house will stay tidy for the next week!!
I’ve noticed that the base of my finger nails where the half moon should be (!) is now faintly blue-ish ? Not sore yet, but really, really hoping this isn’t the beginning of the end for my finger nails!!
Have a good week everyone xxx
Hi all, day 8 FEC 3 and slowly making my way out of the chemo fog! I’ve found that it’s taken more out of me each cycle. I’ve found myself more tired and have spent a few days in bed feeling sorry for myself. Am more emotional and had a big cry/melt down on Saturday night. My arm is still sore, you can see a big red bruise under the skin, however I’m still taking the anti biotics and it is slowly improving. Constipation has been a big issue this time (sorry if tmi!) which has also got me down.
Claire, half way through is great, try to rest up and take it easy. I’m with you with the water situation. I hate plain water at the moment and drink either lemon squash or lemon mixed with soda or tonic water. I usually love drinking water as well. Kim, good luck for tomorrow, I also have a good clean and sort out at home the day before chemo. My husband does his best whilst I’m out of action, however it’s never quite the same!
I’m having a night out Thursday which I’m looking forward to. Am only going to Canterbury, but have decided to book a hotel and have a night away as mentally I could do with a change of scene. I’m planning on wearing my wig, which I haven’t yet done. I’m so paranoid that it’ll be obvious! Sissy xx
Well done Claire, you so deserve an easier cycle this time, lots of rest. Good luck for tomorrow Kim.
I’ve been drinking sparkling water with blackcurrant cordial, but today(2nd day of feeling ok), I couldn’t face it as it reminded me of being poorly!!!
Debbie x
That’s no3 done! Back home relaxing waiting for the side effects to take hold. Starting to feel fuzzy already, but so glad that’s the end of the nasty red stuff!! Met a lady in the until who had just had FEC-T 5. She said T was better because there was none of the sick feeling, but it took the tiredness to a whole new level - like constantly walking up hill. But she did say she still had the good 3rd week She was wearing a wig and I honestly couldn’t tell. I only guessed because she wasn’t cold capping and the hair looked so good!!
I’m still ok with drinking water although after a few days I get sick of it. But I also have to be careful of my kidneys and I’m keen to get signed off at the renal clinic in June - so extra reason for me to keep it up!!
Pretty sure there’s just 3 more of us yet to have round 3 now? Probably this time next week we’ll all be half way through - getting there ladies !!
Take care everyone xxx
Cassy, had my FEC3 yesterday and the fuzziness hit me sooner, but today I’m feeling not too bad although I’m intending on lazing upstairs on my bed drinking water with pineapple juice chasers!! And I have an array of snacks to hand - breakfast biscuits, protein cereal bars and small packs of nuts. I’m hoping to get showered and dressed but if I can’t I’m not bothered. I think last time I was so disappointed that I found it tougher than FEC1 that I was hard on myself and my feelings, so I’m trying really hard to tell myself FEC3 is a real milestone! The end of the nasty red stuff that my chemo nurse said is the worst!! I know I’m going to crash once I’m off the steroids and going to get weepy and down, I’m hoping I can tell myself then that I got through it last time, it doesn’t last.
I have 7 injections which I thought I’d been doing ok on but 7 days after the last one I got aching hips and I stagger around now when I’ve been sitting too long. I’m not allowed to take nurofen so surviving on paracetamol. Will get pain killer advice before T starts though!!
Good luck for Friday
Hope everyone is coping well - who is having round 4 first? Can’t be too long?
Claire, how are you doing on day 3? Hope you’re coping well
Xxx
Kim you have the right idea, just go with it and rest as much as you can. This time last week I felt awful and now I’m kind of back to normal. Just think you are half way there and after this one we only have 3 individual weeks/10 days left of feeling rubbish- we can do it!!
I have my 4th on 11th March but I think Elizabeth is before me.
Big hugs to everyone.
Debbie xx
xxx