I had a rotten night - nose blocked and am getting neosebleeds occasionaly. But the worst thing was that I had awful nightmares about only having a few days to live etc. I’ll spare you the details, but it was horrible. During the day I can push the really horrid fears and thoughts away, but can’t control my mind during the night of course. I think these particular dreams were triggered by a couple of well-intentioned, but slightly worrying comments from my oncologist (“that’s really good the tumour doesn’t hurt anymore, especially as it was so large”) and a fellow patient (“Oh dear” - response to my TN diagnosis, followed by worried look). They were nothing really, but somehow difficult to put aside and clearly my brain needed to digest them a bit more at night :smileysad:Does anyone here have similar problems? Any tips on how to deal with negative thoughts?!
Hoping for a better night after spending all day in in the chemo ward (my drugs hadn’t arrived, so I had to wait around for a couple of hours). :smileyfrustrated:
I’m the same with pain in my arm where I had my second Fec last week.
I spoke to my chemo nurse and advised to place a hot water bag on it …which I’m doing just now to relieve the pain, also paracetamol. She said next chemo they would use my other arm which I am happy enough with.
Hi ladies. There is a free meditation app called Headspace which is good. Also contact your local cancer charity who can arrange for you to talk to someone and get you in a more positive mind set.
Just remember that this is all doable. The TN diagnosis is just that, and steers the oncologist towards your treatment regime. Don’t focus on the diagnosis and do not google!!!
Be strong, keep family and friends close and make the most of the extra time you have with them when you are not working. Try to organise things to do. FEC SEs will be over in a few days and should leave you with two good weeks to enjoy before the next cycle. Lots of love Kxxx
Galligirl: welcome to this really lovely space - it’s a great place to off load and get support and advice.
Thanks to you and ktk for the reminder about Headspace. I’ve heard of it but it completely slipped my mind as a possible tool to deal with anxiety etc. Will defintively download it today and give it a go. And yes, I’m definitely staying away from google. Usually I like to be well-informed and will google minor ailments, but with the cancer I’ve made a very conscious decision to trust my BC team, to ask them for information, and to avoid the often conflicting, ill-informed and scarry stories that I might find on the internet. Plus there is of course this lovely forum - I had never joined anything sort of group “thing” online before, I’m not even on facebook (due to work restrictions), but the support everyone gives here really has proved invaluable.
Jaqs: 2am - that’s terrible! I hope you get a chance to rest during the day. I woke up at 4am, this time due to the steriods I think. Then started thinking about work - which I have actually had to give up due to the treatment, so why I start worrying about work issues now I don’t know. Except, as you say thoughts and feelings are much harder to manage in the middle of the night. I hope your chest feels better this morning.
I’ve got a long list of things to do in the house today, so that should keep my mind occupied. I’m also signing up for a couple of interesting workshops on writing and jewellery making in the next couple of months, so using this time to explore a few new things. And yes, STAYING POSITIVE! :smileywink::smileyhappy:
Hi all, just wanted to pop in and say, don’t worry we all have those horrible thoughts and worries at times, especially during the night when you lay awake worrying. I’ve had those kind of comments and worrying looks from people, even others in the chemo unit telling my their horror stories… not helpful but it happens. Try to remember every case is different, everyone reacts differently and we all worry! Its normal, but talk to your nurses, use the apps, come on here and let it all out, it really helps. I’ve spent hours trying to work out whether the look on my oncologist’s face was good or not! Daft really when I think about it but during the night it was a biggie! AVOID GOOGLE too, its so tempting but lots of it is out of date and its just scaremongering. My nurse said only go on Breast Cancer Care or MacMillan website.
Somebody asked about arm pain after chemo. I have had a sore forearm which pulls when I move it for a few days after each chemo, my nurse said its normal along as it isn’t red or burning or swollen. Keep an eye on it and ask chemo hotline if you are worried. Lots of the ladies have PICC lines though and they seem to be really good for avoiding the constant issues with veins, so don’t worry if you are offered one of those.
I hope you are all managing to get some SE free days, make some nice plans and do something fun…
Hi ladies. I’ve been told to expect dark days as well as good days but if you find your dark days are too many then definitely speak to someone. I’m lucky to have both a cancer support centre at the hospital and a Macmillan centre nearby so it’s worth seeing what is available locally. I’m signed up for one of the pampering sessions too which were recommended on here.
I am also TN and I said I was worried about that to my oncologist who said that it just means they can focus the treatment plan on what will work for me, so no different to other types. I must say I’m clinging onto the comment I got when I went for my marker insertion and the sonographer said that chemo would definitely work on my tumour. I don’t think she’d say that if she hadn’t had experience of seeing similar.
Has anyone else had any dental issues? My teeth are really sensitive (2 weeks after first FEC). No bleeding or mouth/gym sores but every bite is uncomfortable. It feels like it does after a hygienist visit when she’s been poking around and I hope it’s only temporary…I’m back at clinic on tues so I can mention it then. Other than that, I have avoided most SEs.
Thanks for all the reassurance, just what I needed! :heart:
I’ve been to one of the pampering sessions run by Look Good Feel Better. It was a lovely morning. Lots of brilliant freebees (my 17 year daughter was rather jealous, so am guarding my lovely stash of goddies!). Everyone looked a bit grey and apprehensive when we started and by the end we all had a lovely (fake :smileyvery-happy:) glow and were smiling, laughing and chatting. Definitively worth going to.
Had a sweet card with a very unexpected offer of help from someone I didn’t think of as a particularly close friend today. That sort of thing really makes my day. Sometime, in all this awful mess, I actually feel very fortunate - it seems to bring out the best in (most) people! Also had a nice snooze after lunch, so am feeling much more energised. Just put up a new shower basket that required a lot of strength from my arms - my workout for today! :smileywink:
Hi Pulapula. Have you been to the dentist for a check up? The don’t recommend the hygienist but you should get your teeth and jaw checked. If you are going into bisphosphonate you will have to get the all clear from the dentist too (only if you are post menaupause). My dentist recommended I changed to a soft brush but to continue with the EasyPik and floss a couple of times a week. Hope that helps. Kx
Hi ktk, I didn’t have time to visit the dentist before my chemo started although my last checkup was Feb and last hygienist visit was end of June so not that long ago. I was told at my first chemo to cancel all routine appointments and to let them know before I go for any emergency appointments as they need to speak to the dentist first. I think I’ll call the hospital today as i can feel discomfort all the time and it’s getting worse. Don’t want to wait til Tuesday. I think I’ll get a soft brush too.
Good plan. I have an Oral B electric brush with a small round head. I can change the head for a soft one. My dentist was great when I had a check up. Well aware of what she could and could not do, but also keen to ensure my mouth was as healthy as poss. Your chemo helpline will tell you what to do but don’t suffer!! Kx
Hi galligirl, i had constantly running nose with Fec, it may be to do with losing your nasal hair! I then got very dry nose during T to the point of discomfort. Also very watery eyes, due to no eyelashes and an effect of the T chemo… just another joy of chemo unfortunately. If it keeps you awake though perhaps check with chemo hotline, they may be able to help. Also watch out for nosebleeds, when mine got very dry i would get sudden short nosebleeds!
Hi Galligirl. Drippy nose is a common SE. You have lost your nasal hair so nothing to soak up the drip!!
Pulapula, glad your dentist was able to help. I got mouth ulcers round 1 and used Iglu. Ask your onc or gp for Difflam mouthwash and or regular warm water salt washes help.
Have you tried a nasal spray? I went through a period at the end of the last winter where my nose was very dry causing it to bleed occasionally. This was pre diagnosis so nothing to do with chemo - I think it was just spending so much time indoors with the heating on and air conditioning in the office. The pharmacist recommended Sterimar (I’m sure there will be lots of other brands too). Sterimar is basically a water spray to put up your nose - I found it helped. I’ve got one on standby for this winter too!
Yes, drippy nose and nosebleeds are definitely on my list of SE too. My consultant told me it’s very common.
I’ve now had four bad nights in a row :smileyfrustrated:due mainly I think to the steriod, but am on my last batch of anti-nausea pills today, so will hopefuy start sleeping better. And despite the cold-capping I am now starting to loose lots of hair. I washed my hair this morning and tons came out. I’m still clinging on to the hope that it may just be thinning, but I’ve got a hairdresser appointment in 10 days and should know by then if it’s a matter to cutting thinned hair shorter or going for the shave!
I’ve downloaded the Headspace app and am actually finding this quite useful. Only on the basic intro so far, but it’s quite calming and each section is only 3 minutes, so very doable.
Galligirl, you could try hay fever tabs to help with your drippy nose. Also good if you get any itching or irritation anywhere. They give you Piriton with Docetaxol. Kxx
Gaby you should start to feel better once the steroids wear off. Don’t worry about the sleepless nights. I have watched some interesting programmes and love Say Yes to the dress!!! It is ok to nap in the day too. I found with FEC after the first few days I was back to normal ? Kx
We all seem to have gone a bit quiet over the weekend. Hope everyone is ok?! I’ve had a bit of a rough week (at least by my standards). Too little sleep, lurching between diahorrea and constipation, slight constant nausea, food and drinks taste horrible etc. I had my second dose of Carboplatin last Wednesday and am blaming that; the weekly Paclitaxel doesn’t seem to cause any serious problems as yet. Have been feeling rather low on energy as a result and so now am also feeling bored, without being able to rouse myself to do any sort of interesting activity.
I’m now also loosing my hair everywhere - don’t mind it on my legs, quite pleased with that actually, but the other “bits” will take some getting used to. Have signed up for a headscarf workshop on Friday at my Macmillan Cetre - if I’m going to loose my hair, I might as well try to get some style in there somehow!
Right now the chemo seems a bit of a long slog. My lovely husband is keen to book a holiday for next year to give us something positive to look forward to, but I am so uncertain about the timing of my surgery etc that I am holding off for now. It’s nice to dream about having a break somehwere nice next year though.
Hi Gaby, sorry bout hair loss, I too had a shock yesterday when I started losing it in clumps. I thought I was ready for it with a ‘bring it on’ sort of attitude but ended up a mess (mentally) yesterday when it actually did. Anyway a good friend came with me to the hairdresser today to get a very radical pre totally losing it cut! My armpit is swollen and painful, I’m having chemo first, surgery next, has anyone done it this way round and experienced pain & swelling? Should I mention it to BCN? Oh they did ‘tag’ the 1 lymph node they say it’s in and the tumour-hope the metal tag isn’t swirling around in my armpit!!
Hi all, I keep thinking my hair will start to fall out but no sign yet (the odd hair when I wash/rub my head), and its time for my second FEC on Thursday. My scalp is so sore though on the top. I do like my short crop that I had done last week but I guess once it starts coming out I’ll be shaving it off. My hairdresser said she would come round to the house to shave it if/when I need her to although we do have clippers for the kids hair so I could do it myself… My mouth is not as sore now, so thats good news. Just got to gear myself up for the next round. Wishing you all well with your ongoing treatment x