I’m really hoping I’ll have some time to talk with the nurse before they start the treatment Sally. It’s great you got to pick your seat and got introduced to all the people working there, Funny you mentioned Love Island as I watched my first ever episode a few days ago. Entertaining in a way!
Glad to hear it's going fairly well Kip - long may that continue!
Sorry your pre-chemo's been cancelled CDC. Mine is on Sunday morning - think that's when it'll all start to seem very real 😱
Have to say im quite apprehensive about the PICC line. Not the fitting, but coping with it 🙄 Guess I'll adjust soon enough.
Came me home today to an appointment letter for an echocardiogram in a month's time. Took me by surprise, though when I looked back over my oncology appointment notes I had written down about it. Same day as the Look good, Feel good session I'm booking onto. Honestly before this the only time I'd been in hospital was being born - making up for lost time now 😂
Thought you might like a pic of these peonies from my garden to brighten up the day. Hugs all
Kip, I found that the seasickness bands worked for me, but like you, I was nervous to take them off! I tended to keep them on for a few days until I'd finished taking the anti-sickness tablets. I probably kept them on too long really, but I didn't want to risk it! Glad you're feeling ok x
Hi Ladies, Well reached day 5 now! Yesterday was pretty good, I felt a little nauseaus when I woke up but ate breakfast and kept it down. I waited until 11 then took one of my "as and when" sickness pills which seemed to work and then felt ok for the rest of the day, managed a walk with the dog, had a friend round then stayed up til 10. Unfortunately had to be up at 5am this morning as daughter gone to France with school fro the day and didn't want to miss saying goodbye, so went back to bed for a lay down til 8 so expecting to be sleeply later but other than the normal "pregnancy sickness" feeling again this morning, now ready to start work at 9 for the day. Just so glad I work at home, makes it so much easier.
CDC - what a nightmare about your pre-chemo appt. I never really got one either, I met my Onco nurse at the resulst meeting and she gave me a quick chat and a short tour of the unit. Most of the info is in the booklets they give you but its still nice to ask someone face to face. On the day of my chemo, the nurse showed me all around the unit and did lots of explaining and as she has to sit with you to administer the chemo (well with FEC at least) you have a lot of time to ask things, just remember to take notes (or getting someone to). My OH wrote down about the meds and when to take them etc. I also had some questions I wanted to know about. Nice you got to see the end of sportsday even if your daughter didn't seem to notice, she will have and it will have made her happy!
Sally good to know the follow up appts between chemos are short and sweet, would make sense just to have a phone call though wouldn't it, we spend half our lives at the hospital as it is, one less trip would be heaven!
Do they offer FaceTime appointments? My oncologist has said she sometimes does this if it’s more convenient. Glad the cold cap is working Sally. I got a call at 7.30 this evening to say tomorrow’s Pre-Chemo appointment is cancelled due to shortage of staff. Now I really feel in the dark! Apparently most of what they say is in the chemo booklet but I’d prefer to talk to someone face to face.
Ooh just remembered another tip my chemo nurse gave me for slimy tasteless mouth... buy some Vit C fizzy tablets (the sort you put in water) and suck on a quarter of one, apparently livens up the tongue?
Thanks Shi, I am using the anti sickness bands, just daren't take them off...just in case! Not sure when to?
CDC - my daughter asked me last night if my cancer will come back... so hard to answer isn't it, I just wanted to sob... I told her "Nobody really knows, but they are doing everything to get rid of it and then I will be closely monitored and if it returns they will find it quickly".. what else can you say? Sorry you haven't had much help from school, thats the last thing you need isn't it. I had a good rest of the day yesterday, even took daughter to her swiming lesson last night. Slept well (apart from the wind rattling the windows). Managed to keep breakfast down today, and have finished the anti-sickness tablets now (although I do have another type for as and when but so far not taken them). Last day of steroids today so I'll see what that brings. Now back at the PC ready for a mornings' work, feeling a bit tired but pretty much ok.. fingers crossed!
Oh yes, nearly forgot, used the Biotene mouthwash and its really quite nice, very mildly minty but definately helps with the slimy mouth. Still need to locate the toothpaste, hubby wasn't up to going to Boots and Superdrug.. duh!
Hi @cdc. Also look at this thread but am on the May one primarily. I used the cold cap again today although they aren't sure if I could as I had to have it cut short after last chemo as I had a big mat at the top which had to be cut out. If I lose more on top I will need to put gauze on that area next time. Have you got the option to use a cold cap?
CDC, I have kept my children's school informed of every step of my treatment and they have been great, they have weekly meetings with my daughter who is 13, just for a general chat if she needs it. Her teacher even sent home face packs and chocs for half term so that we could have some pampering together. School also put something in place for my son in case he had meltdown in exams. My children are at high school so I don't have the playground attention but living in a village has proved hard going out with new haircut as everyone notices and comments, after 2 ladies had commented and I explained (all the time fighting back tears) I went home and hid. I have asked the friends who know to pass on to others to save me and them embarrassment. It's a hard one coz nobody knows what to say. Good news is no more sickness so far today, just a bit fuzzy head but managed lunch ok. Hubby has purchased biotene mouthwash but couldn't find tooth paste so will see how that goes and let you know. Hospital just called to say doesn't matter if CT scan not done before appt as they just want to see how I have coped with first chemo and make any adjustments to medication.
Now off to walk to shops, need some air. Take care everyone Kip x
Thanks for the heads up Dawn. I won't chuck out the fake spit just yet then! Mine was prescribed by the dentist. Not sweet as such just a weird taste but better than a disgustingly dry mouth I expect. x
Trust me ladies - at 2am when your lips are glued together and your tongue is stuck to the roof of your mouth and you can't swallow - fake spit is the way to go!! Biotene oralbalance gel - it's incredibly disgustingly sweet but if you can poke a bit between your lips it works. Happy days x
Morning all, day 3.. had pretty good sleep, woke once feeling sickly but fell asleep again, must help taking steroids morning and lunch? Had cup of tea first thing and can still taste it yayyy!!! Took anti sickness and had toast which I enjoyed but then from nowhere i was sick, not too much but felt immediately better, very much like morning sickness. Think I need to eat before taking anti sickness to make sure it's not bought back up. Feel ok now, mouth little coated but not too bad. Got kids of to school, feel so guilty they have been thrussed into this world. My son has 3 more GCSE s and then he is finished, can't believe he has managed throughout this nightmare.
CDC I know what you mean about adverts etc seems they are everywhere. I can't watch either! I'm hoping to do some work tomorrow if things stay ok, will be good to do something normal for a while.
Hi all, so far mouth ok, bit coated on tongue but nothing much. I have read on here that if it gets bad use Biotene toothpaste and mouth wash available from Boots/Suoerdrug as it's especially for chemo guys like us, there is also a spray I think and they all deal with dry mouths, haven't got any in yet but may send OH in tomorrow to be prepared. Also ladies recommend speaking to onc team or go to Gp for Difflam mouthwash for soreness or ukcers is needed.
Now off to take anti sickness before bed and I'm still wearing my travel sicknes bands, darent take them off in case they are doing the trick ... Its not a good look as ones black and one is camouflauge pink!! Oh well now i have one boob and once the hair goes and I am eyebrow less 2 weird arm bands will be nothing!!
Sleep well all XX Kip
I bought a new water bottle today so will carry that with me, Has to be better than the grim saliva substitute! Something in the saliva protects the teeth though so maybe that’s why my dentist prescribed what he did. Just a thought - I wonder if chewing sugar free gum would help? I’m allergic to the ingredients in some mouthwash so the warm salt water gargling is a good idea. I think ulcers are another side effect we’ve got to look forward to and I do remember my Mum getting me to gargle with saltwater if I had them as kids.
After diagnosis in early April and a WLE with SNB on 1st May, my first chemo cycle is set for 20th June - 3 x FEC and 3 x T with Herceptin injections is the plan. Before then I've got an optician appointment, bloods, the chemo nurse session and a PICC line to be fitted - be a busy old week.
Just a little about me as I think we'll be roomies for a while 😉 I'm married with no children and one dog. I read, knit, crochet, bake and sing. I talk quite a bit too!
I'm a pragmatic soul, and while I'm under no illusion about this being an easy ride, I am determined to stay positive - remind me of that will you 😊
Look forward to sharing with you
CDC, sorry I didn't mean I have to inject them, don't panic.. it's 2 tabs a day for first 3 days i think. Chemo nurse said you get the injections to administer with the T part. I know it's overwhelming isn't it, I feel physically fine today but mentally teary, day 2 and so much more to come. Just been out to walk dog and pick up bread, fancied a sausage roll too so thought blow it they said eat when you can. Don't think I could do the fasting thing through this.. are you? I did ask at hospital about it and they were definitely against it but some swear it's great, I think you have to follow whatever feels right for you and gets you through. I did meet as lady yesterday on cycle 4 (3 fec 3 T) and she said her first cycle was worst but then got easier, she looked well and was laughing so took that as a good sign. She's doing chemo first then double Mx as her2 +. So I assured that part was not too bad. My best tips I've found so far are drink lots day before and during and after, keep snacks close by I keep nibbling just in case! Probaby put on loads of weight but hey! Get a good thermometer my cheap one is way out as got nurse to check so now awaiting delivery of an ear one.
Big hugs Kip xx
Morning, well survived day 1, no side effects to mention, slept pretty well
, Legs a bit achy? Feeling ok this morning and have eaten breakfast which I can still taste as yet. Taken steroids (nurse said to take them morning and noon to help sleeping) and first anti sickness done. Gonna take things easy today and see what happens. Hope you all are ok, Cassie glad to hear you feel bit better and Sally glad you're effect free still XX Kip
Morning all, Feeling a little more human now though I am having tummy troubles, even though I am not eating solids. Did manage a little yesterday. So now taking tabs to stop the diarrohea. I am injecting Filgrastim, two to go. Injection ok achy bones afterwards. Sometimes feels as though my hips are going to pop out. But as I am laying down all day not too bad. I did go to my surgery yesterday to see a nominated cancer Dr for me, lovely lady. She has given me tabs that dissolve under the tongue in case of sickness next time. The oncologist called they are going to inject me with an antisickness drug with all the other chemo drugs next time, will last for 5 days. Fun. Going to have a shower, still have hair. I was advised to buy rubber gloves for washing up, gardening, cleaning. But have not felt up to any of it. Hugs Cazzy X