Hi All, KTK that pain sounds horrendous, my Onc said yesterday that when you change from one type of chemo to another that the first new one can be the worst because you body had kind of adapted to the first lot and then it has something else to deal with.. hopefuly the next ones won't be so bad. Have to say, I am hoping not to have the injections as my hospital don't automatically issue them, only if your have trouble getting the white cells back up otherwise its just a course of antibiotics.
Lisa Marie - I find to that to remember what and when to take all the drugs I keep a diary and write in when I have taken them, the nurse wrote on each box when to take them too, so that helped. I had anti-sickness for three days, steroids for 3 days and then anti sickness ones as and when required. At day 7 I had to take 2 antibiotics a day until day 15, again I wrote on the box! Its a lot to remember but you quickly get in teh swing, I know some people use one of those boxes with the days of the week on. Glad the chemo went ok, now rest for a few days and you'll pick up again soon.
I enjoyed my Pimms last night, delicious! Only had the one though.. being very good! Also getting used to seeing myself bald, actually makes me laugh now and feels quite naughty wandering around the house, not brave enough to go out bald though, I still have stubble in places so a bit patchy, nice and cool in his heat though. The wig takes some time to get used to but everyone thinks it looks nice and you couldn't tell, but its quite warm!
Take care all Kip xxx
Oh no ktk! That sounds horrendous. Glad the pain killers worked but definietly a good idea to contact your GP.
Hope you are not in any pain today.
Does anyone know if we're allowed to take ibuprofen for headaches? I've had a few nasty ones which wake me up in the night. Take paracetamol (after checking my temp) but doesnt always work. Also I've not been using deoderant as I thought the advice was not to. However, in this heat I really feel I need it! I have some Bionsen. Anyone using that through their chemo treatment?
Morning ktk, did you get the pain because of the injections? I had the same sort of pain once I'd taken my first injection after my first cycle of T and like you ibuprofen and paracetamol had no effect. The hospital had given me codeine to bring home, but I'm allergic to that! My daughter ended up going to an out of hours doctor for me and I was given a bottle of liquid Morphine, which helped.
To reassure you,chemos 5 and 6 weren't too bad-maybe my body had got used the different chemo. Also, I persuaded my onc to reduce the injections from 7 back to 5 (the number I had on FEC) so don't know if that made a difference.
Glad you're feeling better this morning xx
That’s fab news CDC and interesting about your genetics. Sounds like your meeting was very productive. I asked my Onc about injections and she said our hospital don’t give them but provide antibiotics each cycle instead but if my white cells get low I may get them then, I may get them on the T part but may not... so it’s a waiting game for me.
now gonna pour that Pimms... night night all Kip xx
Well had my ONc appointment this morning and have never been so scared to get results back. Heart nearly beat out of my chest. But glad to say bone scan, CT and heart scan are all normal... yipppeeee the relief is immense. So onwards with chemo, next appointment with Onc. is 28 August so have a breather in between appointments. I have to decide by then whether I want to have lymph nodes cleared or just treat them with rads? Anyone have any ideas? More decisions! Apparently the outcome is the same either way but peace of mind having them removed may be a factor. Both options have chances of lymphodema, and I will still be having rads anyway to chest wall and under collar bone. More scary things to think about, but for now the relief is good and as a bonus I asked if I can drink alcohol and she said yes.. so Pimms for me to celebrate tonight.
I hope everyone had good days... oh Onc also said that a a gauge the 4th cycle is the toughest as this is the first of the T part (if you having FEC-T) and your body adjusts to the FEC and then you change, so a bit more tired on this cycle but should then follow a pattern on the home straight...
Take care all Kip xx
Anti-constipation tip from me is overnight oats using All-Bran instead of oats. I use 50g all bran with 100ml almond milk, fruit and yoghurt all layered up. Pop in the fridge overnight, drizzle a teaspoon of maple syrup over in the morning and enjoy. Slimming World friendly too if any of you are on that journey as well.
I find it it really easy to underestimate how much I need to drink in this weather and that deffo has an effect on my 'performance' 😂😂
OOh KTK, that sounds painful, Sennokot did help me, I also ate prunes every morning on my cereal. .not sure which did the trick, lots of fluids too.
In response to the lady with small children, I have two children but mine are 15 and 13 so a different situation but with regards to the actual side effects... I was still able to be Mum (albeit mine can help themselves too) but you may find you just need to rest more, lay down and watch tv with them, read books... but please ask for help, your family/friends will want to help, I think they feel useful and it makes them feel better, even if its just someone to put the washing on/out or make lunch, hopefully the side effects will be mainly the first few days, after 3 days I was able to work again and by 7 days felt pretty much nomal. Take all the medication they offer you and don't be afraid to ask the helpline any questions if you feel unwell or have other symptoms. I wasn't told about chemo being in sweat etc and wasn't advised to not hug or cuddle children only to be careful around them during the second week when your immunity is low. Please speak to your BCN or chemo nurse and she will be able to asnwer all your questions. Big Hugs Kip xx
Hi all, yes my hair started with a strange crawling feeling, and my head felt sore (like you have had it pulled back too tightly) by about day 9-10 after first cycle. Then on about day 10-11 it came out in shreds when I ran my hands through and then by yesterday day 15 it was falling out around my ears and was impossible to put up with. Got wig today and it looks nice, takes a bit of getting used too, feels like wearing a hat.. but its another option to wear. Feeling better about the hair loss today though, at least I'm not wating for it to happen. Its funny coz I thought I wouldn't be bothered but it was/is horrible!
Got the big results tomorrow .. bone scan, ct and heart... gulp.. terrified... that's the next bend in the roller coaster to negotiate...
Anyway have a good evening, enjoy the sunshine
Hello ladies - sending the coolest hugs possible in your directions
So far so good here, runny nose is today's symptom. Hair still seems intact and I'm on day seven now, crossing everything that the cold cap will do its job. My hair is a short curly thick bob so I can take losing some. I don't think I'll be as brave as you ladies if the worst happens. Does anyone else use Argan Oil.
Enjoy what sunshine you can. I sat outside last evening for as long as I could. So lovely.
Morning Ladies, well had a tough old evening/morning in the end. Hadn't realised just how emotional loosing your hair makes your feel (or me anyway). Had a bath last night, laid down and more little stubble came away... Sorry can't remember who asked but I am on FEC-T and mine started going on day 12 of the first cycle, fully gone by day 15. This morning got up and looked like an old man in the mirror. Sobbed in bed, OH not good on emotions.. told me its just vanity and that its not all about me! That made things worse, don't think he knows just what is the right thing to say so is trying tough love today! Have just been out with hat on and velco fringe, felt like everyone was looking at me.. probably not but felt like it. Getting wig today so hoping that boosts the morale. OH just rang and questioned why I feel worse about loosing my hair than loosing my boob.. .difficult one to answer as I guess I see the hair more than the boob? Jeeze this journey is tough isn't it.
Thanks for soap tips Shi.. I'll look that up.
Glad to hear you are feeling ok Embolorry, and good luck to those who are about to embark on cycle 1...its not as bad as you think....keep smiling... I'm trying too...Kip xx
Hi All, well its done! Grade 1 ... actually I think I feel releived that its gone, having it coming out in handfuls was so upsetting, not sure I rock the bald look, but I have a hat on with my velcro fringe under it and its ok, getting wig tomorrow so will see how that goes, although think it may be too hot at the moment. Have actually stopped crying now, I think my hairdresser felt worse than me, she tried a Grade 2 but it was still qutie long and looked odd with bald bits, so off it came. Roll on next year when I have new hair, but for now, I'll have to live with it, all part of the journey as they say. Kip xx
Hi Kip and everyone
I'm also considering the shave although I’m only on day 7. I thought losing my hair wouldn’t really bother me but the nearer I get the more freaked out I get. Good to see people out there that found it liberating. I must say having shorter hair has been so easy so no hair should be a doddle!
Thinking of you all and thanks for the wise advice and support. Hopefully when the day comes I’ll feel empowered too!
Take care Clare xxx
Hi All, thanks for the tips regarding the shave Shi, haven't braved it yet but shedding like a cat today. Im trying to hang on until my wig is ready but not sure I will make it. Wasn't expecting it to be so emotional, I thought I was ok with it but its really depressed me over the weekend. Lots of tears and fears at the moment... I think hightened by results of scans this wednesday.. I'll slap on the make up and go for it at some point... Hoping I will feel empowered once its gone!
Not sure who asked.. but I am on day 15 today and the hair started coming out on day 11/12.. I had noticed my head felt sore (like you had worn a hair band too tight) from about day 8-9 but the hair started falling fairly quickly from about 12ish.
Embolorry - good luck with the chemo today.. another one ticked off, keep on with ice cream anything that helps is a plus!
Ladies does anyone kno the when your shave your hair do you go to grade 1 or 2 or straight completely bald. I’m getting close to the shave and have heard it can be sore so wasn’t sure what to do? Never thought I’d be asking this question!,
Lovely to see you are all enjoying the day, I’m watching football to! Ha£ a very tearful morning but ok now, just normal roller coasters of emotions. Come on england 🏴