When I had BC the first time my youngest was 6. The oldest was 16 and a couple in between. We told them altogether. I remember my son asked if I was going to die. I told him no and he just accepted it.
It looks like my oncologists want to see me after every cycle to check I’m ok. Saw them yesterday and was in and out in 5 minutes having reported no side effects and was just given the go ahead for next cycle. They then gave me an appointment after that before cycle 3. Got a call today asking to change that appointment to mid morning which is quite inconvenient when I’m doing short days at work as it pretty much knocks the whole day out. I asked if they can do a telephone review because if there’s nothing to report it’s pointless me going in and if I do get rough or anything in the meantime, I’ll contact them. Waiting to hear if they can do that. I got paranoid today when a single hair fell out, this from the woman who used to have to rinse her hands when hair washing her previously long Hair Have just washed it and still nothing coming out, so far so good for the cold cap.
Dunno if they do offer it or not, from what the lady that called me said I shouldn’t think so.
How annoying they cancelled your pre-chemo. most of it is in the booklet but it’s an opportunity to ask questions, get shown round the chemo unit (and I picked my seat too right by the window) and get fitted for your cold cap if you are wanting to try it. I was also introduced to all the ladies that work there. Having the appointment made it far less daunting on the day of the first chemo. It was a useful appointment. Hopefully they can sort out to see you before you start the chemo.
Last day of a full week at work after chemo for me. Been working 9.30 ish to 3 and it’s been fine. Tired by the time I get in but I’m making myself stay up at least till Love Island (I know, I know) so that when I fall asleep I don’t wake up at silly o clock.
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!
So after no side effects I got hit yesterday with awful bone pain in hips and back from the filgrastim injections. I had to take codeine which just took the edge off. At one point I momentarily passed out on the floor in a sweaty mess of pain. Was going to call hospital but left it to see and it passed very quickly although I was very tired. All I was able to do all day (after blitzing the housework first thing before it started) was lie on the settee watching football. Woke up this morning right as rain again.
So glad it’s passed Sally but what an awful experience. Hope you have a much better day today and are pain free. What are these injections? Do all chemo patients have them? I really do need to do some reading up as I won’t get a pre-chemo appoibtment now. Hope everyone is doing OK today. My husband and I went to a concert given by the choir we usually sing with, it was fantastic but just so frustrated and sad that I haven’t had the energy to go to rehearsals. Feeling very tired today too even though we were only out till 10.15. That’s a late night for me now!
I don’t know if everyone has them. They are injections to boost the production of white blood cells to fight ant possible infections. It helps boost the immune system. I had to start them last Sunday and do them everyday, today was the last one. I assume I’ll have to do them again after the the cycle but I don’t know for sure.
Morning I havent been given any injections with my Fec so guess I’m not having them. Glad the pain didn’t last too long Sally. I’m on day 7 now, had emotional day yesterday, overcome with fear, anger and dispair and couldn’t shake it until a friend came over and took my kind mindm off tuings it builds up I guess. my soni left school in Friday and I feel we should be . celebrating nbut instead I feel I’m just counting days between chemo, appointments. As for side effectsi have a bi of a sore mouth and had a banging headache yesterday. Can we take paracetamol? I rang the helpline for sore mouth advice and she said salt water was best or to buy cordysl mouthwash. I’ve done both and it’s ok now, still have taste buds too. First day of antibiotics which have to take for 10 days, does everyone get those? Noticed my head is starting to feel sore so guess the hair won’t be around for long, dreading that bit more than inthoughI I would. Will brave the shave when it starts. Oh well 17 weeks left til end of chemo !!
I’ve been taking mine in the morning Jencat, straight from the fridge! no one told me a specific time to take them, just once a day.
The pain was like being in labour. Still, given that it’s the only side effect I’ve had, I can’t complain. (That won’t stop me though!)
My white cell count was slap bang in the middle of the normal range pre chemo and I was fine for a week. I might suggest I have a couple less next time, if I have them to try and avoid that again.
Funnily enough though Kip, I didn’t get any antibiotics. Maybe you get them instead of the injections where you are. As for paracetamol, as far as I’m aware that’s fine to take.
Sorry to hear you’ve both had some difficult days Sally and Kip but glad you’ve come through them.
Had my chemo nurse appointment this morning which was useful - helped cement a few things in my mind and plenty of chance to ask questions. Was also fitted for my cold cap. (I will also have the injections.)
Has anyone else had to take a wee sample along with them on chemo day for a pregnancy test? ? Apparently it’s protocol for anyone under 55 and despite me being adamant I’m not pregnant I have to have it ?
Bought some bits and bobs today, toiletries for my hospital bag, wide toothed comb, soft toothbrush, hair net that kind of things. Also ordered a silk pillowcase to reduce friction on my hair. Not much longer now.
Hi, had to post as sat here and just realised I no longer have “chemo fuzzy head”. Yayyyy. Just slight sore mouth. Is anyone else taking manuka honey whilst having chemo…, have read good reports about it but wasn’t sure
Had an rough week this, woke in the middle of the night on Wednesday it felt like my heart was trying to jump out of my chest. Monitoring via my Apple Watch I was beating upwards to 98 beats per minute, this then combined with joint ache was awful. I took some pain killers and rode it out, very emotional that day also. Spent Thursday resting, woke up Friday and decided to wash my hair as my scalp was itching. I started to gently comb it out and realised that my shedding was not normal shedding. So made the decision to shave it off, then promptly broke down when my twin brother rang me crying (I’d sent my immediate family a picture of my new look). Hoping that next week will be better…
Lots of ladies use manuka honey, also Life Mel honey is good during chemo. Miss p ???well done with shave, it’s another hurdle you’ve jumped over on the journey, keep urging the make-up on it does help, promise ?? kip great news you are feeling ? LJ, 1st time I’ve heard someone’s had to provide a wee sample, they usually just take your word for it, at least you know they are being thorough. If you are on fec, the red one makes your pee pink, so don’t ???it’s normal, ensure you drink 6-8 cups fluids a day too ??Shi xx
Hi everyone Sounds like a bit of a mixed bag with regards to side effects and emotions today. Glad everyone is feeling a bit better now. Have to be honest and admit my day was a bit of a right off as I just felt so low. Father’s Day is still hard going as it’s only the second one since my Dad died and my family has just had so much to deal with in the last couple of years and now we’re all having to come to terms with my diagnosis. I also had an overwhelming sense of anger that I’ve been under the High Risk Family screening at my hospital for 8 years and my tumours still weren’t picked up earlier as I am ‘mammographically occult’ due to dense breast tissue and now I have to deal with all this b***y treatment. I know I’m just wallowing in self-pity and I’m sure I’ll pick myself up soon but I need to allow myself to be this way sometimes and not relentlessly positive- it’s just too exhausting. What is the thinking behind the Manuka honey? I’m willing to try anything that might help. Is anyone keeping a ‘chemo diary’? My OH and I were wondering if there is an Ap you can use to track side effects etc… Is this the sort of thing I’d have found out at a Pre-chemo meeting? Hoping to be able to pop in to the department between appointments tomorrow so I at least know where I am going on Tuesday (if I get the ok to start) and what the chemo rooms looks like. Best Wishes to all.
Hi all,
Just wanted to send love to you all.
I def have dry, sore mouth but I find eating a whole tub of salted caramel ice cream seems to distract me for a bit!
I put Manuka honey in smoothies and teas, but I don’t know whether it does anything apart from taste nice…
Wishing everyone starting chemo this week lots of love, and hope everyone has good weeks…
Sleep well all,
Em
Xxx
Hi Ladies, Loving the ice cream post Em, anything that takes your mind of things has to be good. I hate ice cream but found myself craving some the other day… weird!
CDC - Glad you allowed yourself some angy/down time, its hard being positive isn’t it, my weekend has been emotional too. I keep a diary for my chemo, the nurse said it was useful to see a pattern in any side effects, I write my temperatures and the times I took my pills too as I can’t remember half the time! At my hopsital you can pop into the chemo unit any time, I just wandered in the week before my chemo and the nurses showed me around, I am sure they’ll do that for you too, it does help to take away the scariness when you know what it looks like.
Miss P - sorry to hear about your side effects, are you on the first cycle? Is it FEC? My head is itchy and sore too, day 8 - so keep expecting something to happen, I am hoping that once its gone I can move on from the waiting for it to go and get used to being bald, I’m getting my wigs tomorrow in readiness and have some little soft hats to wear but still dreading it… if only they could invent a chemo that didn’t cause hair loss I think we would cope so much better!
I am now going to have some Manuka honey, tastes nice if nothing else. Feeling pretty well today, still have slight sore tongue but otherwise ok.
Aagh! Had 3 appointments at hospital today: wig selection, wound check with surgeon and an echocardiogram. What they failed to tell me was that I was also booked to see the oncologist at 1pm’. I’ve had no letter, text or phone call telling me this. I informed the hospital last week I wouldn’t be able to go in till after 2pm today as my daughter was performing in her concert. They also told me I won’t be seeing the oncologist on Thursday either as despite telling me verbally and sending a letter to confirm the appointment the computer system now says it’s been cancelled. I’ve now had no pre-chemo and no talk with the oncologist so feel totally unprepared for my first session of chemo tomorrow. I have been given 3 different times to arrive at the chemo suite by 3 different people but hoping the Sister in charge told me the correct time. Who knows??? Just to add further stress my CT scan at a different hospital tomorrow morning has been brought foreward to 8.45am. Oh well Hopefully I’ll be so taken up with logistics on getting from one place to another that I’ll have less time to be scared!! On a positive note my wounds have started healing well so no more PICO dressings- yippee!!! I think recording temperatures, drugs and times taken and side effects might help me to see a pattern too. My brain is already frazzled! Have most people found they have an itchy scalp before their hair falls out?
Kip I hope you like the wigs and that your mouth is less sore. Enjoy the honey! Xx
Have just washed it and still nothing coming out, so far so good for the cold cap.