Glad to see most of you are doing well but scary that some have had tax no. 2 - reminds me that mine is coming soon. Well done Jackie I hope you’re feeling ok this morning. Rachel I hope today goes well for you I can’t imagine how you must have felt yesterday - I get myself so worked up before each treatment I think I would have had a meltdown if sent away! Don’t be afraid to ask for different pain killers if you need them - I don’t know what you were given - I now have some stronger meds but only after struggling with over the counter ones. Like Booksandwine I found the T harder partly because I was less informed about the potential SE’s. I feel I was sent into battle without an army which was very frightening! Backup soldiers now on standby - meds, creams, mouth wash, heat packs, chewing gum etc - and this forum!
I see others have also found their temperature rises - mine went up to 38.2 at one point causing a complete panic and hovered a degree above my normal for about 6 days. I will know to expect it next time and not be so worried.
Just ordered the moo moo udderley smooth cream as one (!?) foot getting very sore and cracking. My nails are sensitive but no ridges nor flaking yet. I find it amazing the variety of ways the same drug affects different people.
Spending the day again trying to catch up with general chores having not achieved anything last week. I find I tire quickly and can’t manage much before needing a nap, but at least the chemo brain is a little clearer.
Whishing everyone a good day,
Thanks for the encouragement and suggestions Lovewine, Rosie and Joan. It does sound like I should be seeing an improvement soon.
It was a shame about the tramadol. i already know I have a reaction to codeine so that takes out some of the alternatives. I think I could deal with the aches and pains but I find the headache and the nausea difficult. Those didn't really start until yesterday. Paracetamol usually deals with headaches pretty quickly for me but this one has really set in and makes everything seem difficult.
Rosie, my daughter is 7 and has been very mature about all this. She knows when I need to take it slow and gives me lots of cuddles. I have arranged post-school playdates (with dinner) for today and tomorrow so just have to manage a couple of hours before bedtime. I reckon I'll be in bed before her tonight.
I'm now dreading my next Tax already. The final one not so much as my sister is coming over from NZ to look after me. She'll be here for 7 weeks and that should cover my op as well. I can't wait for her to get here. The most difficult thing has been not having another adult in the house all the time.
Hi jos I am so sorry you have had such a torrid time and that your partner had to go away whilst you were so low. Did you take some painkillers for the aches and pains it does help. I sat there all day 4 suffering feeling sorry for myself and at 4.30 I had a text to see if a friend could visit so I kicked myself into gear and took some pain killers and I was able to laugh with her. I should have taken them before! Sorry chemo brain, I have just read your post and you did take pain killers!!!!!! You should start to feel better after today. I am on day 11 and apart from fatigue am not too bad! How old is your daughter is she old enough to know that you are having a bad day and need a bit of help? You are quite right it is such a serious medicine for such a serious illness! Hope you get better as the day progresses. x
Good morning all.
Back after a few days silence. I've just been catching up on posts and glad to see that many of you are doing well and getting out and about.
I've had a horrible few days. Having done ok with FEC where I carried on pretty much as normal for much of the time, albeit a bit slower, Tax has really knocked me for six. Since day 4 I have had aches and pains nearly all over, especially throat, chest and stomach which kicked in an the same time as the very low mood I get when I come off the Dexamethasone. For the first time in all this, I have lost my appetite (not good as I was already losing weight even with eating quite a lot). At the same time my partner (who lives 50 miles away anyway) had a work crisis and had to disappear off on a plane (back now). I feel like I just lost 3 days as I just flaked out on the bed for hours at a time. Friends were offering to come over but I just couldn't face visitors. I have been taking paracetamol and ibuprofen. When I tried the tramadol, it made me really sick. At least my daughter was with her dad this weekend so I haven't had to worry about looking after her.
Today is day 8 and I still feel lousy. I have my daughter back with me for most of this week so somehow have to get myself back in gear. Judging by all your comments, it does start to lift around now so fingers crossed.
I guess I am lucky to have made it this far in to treatment before really feeling bad but it suddenly seems such an uphill struggle and a real reminder that this is serious medicine for a serious illness.
I hope you all have good days today.
Good morning everyone! First frustration of the day I typed a post and then lost it! So here goes take 2!
Wildpurl chemo is a roller coaster ride. We always dread the administration and the side effects then we get through the first week recognising our symptoms from the previous cycle. Then week 2 comes and we begin to feel better and just as we are recovering well its time for another hit!
Your feeling are perfectly normal I am wishing my life away here by waiting for July 10th my last chemo! I am feeling very impatient now but also anxious in case something happens to delay it with my track record! My next one is on Thursday and I am looking forward to getting it behind me because there will be I left!!!! I do not like needles I hate it when they take blood and look the other way I can't stand the cannula and usually make a wailing noise when they insert it because each time seems to be harder for my poor viens! and they feel very bruised afterwards. I am not too keen having it in the right hand as it restricts puzzle books, eating and drinking. I pack myself a cool bag with drinks and snacks that I can pick on throughout. This helps the time pass and I always seem to be hungry. We have a 2 hour trip to Nicosia at the moment so by the time I get there I am starving! Hope this reassures you that we all experience these emotions!
It sounds like you have made some
yummy things to eat we will all be over to dinner!!! Hope you enjoyed your walk!
rolicarpit I am glad your eyes seem better and that you bbq went well. Good luck for the blood test I have mine on Wednesday!
Hope the rest of you are all ok and been taking advantage of the good weather! xx
Hope everyone has a had a lovely day and made the best of the sunshine. Lovewine.... hope you had a good day. I grew up about 1 mile away from a place called Holbeche House which is where the gunpowder plot men ran off to after the plot was discovered, I think most of them were either wounded or killed there ... fascinating, the house still has musket holes in the wall.
Thanks to all re nails... I think I have probably missed the boat on the nail varnish front as they seem way past that, although have cut them short and am hoping it will grow out although I will ask the oncologist when I see him on Tues.
Glad your events went well Rosie, I'm so impressed at your will power re drinks etc and Joan your trip to Oxford sounds lovely, I often dont wear anything on my head as I find it just too hot and uncomfotable and have very rarely noticed more than a quick glance off people, I feel much more confident now, in fact I'm starting to worry about my hair growing back as I think its going look worse .... how stupid is that?
My eyes and nose seem to be much better, I've been taking claritin (well a cheaper version) for a few days and it seems to be working which is great, it meant I could enjoy the BBQ today which was great, nice to see colleagues from work and catch up a bit.
Well, start the treadmill again tomorrow ... blood test at 9.40.... here we go again !!!
Have a good evening
Lovewine there must be something wrong with me I am really looking forward to Tax 3 on Thursday as it means there will only be one left! I do know what you mean about the next stage in the treatment looming. It would be good to have a date and talk to the surgeon about what will happen. I suppose they wait until you have completed chemo first. As I am going Private here for op the surgeon fits them in quite quickly. Anyway he can't do it until I am back from UK after Aug 5th!
I do hope you enjoy your day at the country park and that it will lift your mood. I go up and down in the day. Sometimes I feel very sorry for myself and very lonely. The Gunpowder Plot is one of my favourite historical events as a Key stage teacher it is an event we studied regularly.x
rolicarpit have you painted your nails they say it helps? Mine flake and I have cut them back a bit shorter but I have got a friend to keep them painted for me all the way through chemo. They will go back to normal like everything else.
Do hope you enjoyed the bbq!
Lovewine I hadn't thought of getting insects in eye due to lack of lashes! You were certainly very busy yesterday well done you!
Louise glad you enjoyed Whitby! The fatigue seems to build up and its the one thing I can't shake off between sessions. I think it is because I have always been so active teaching and now suddenly I am at home my brain is willing but my body just isn't. I constantly have wobbly legs. I do try to take the dog just a very small walk in our road each evening when it has cooled down here but its only a few metres! I am finding the inability to sleep more than 2 hours a time during the night very frustrating even with the help of sleeping tablets. Some days I do manage to cat nap but only for about 20 mins. I guess its just another thing we are going to have to get through day by day. Yesterday I was awake for 19 hours and I still didn't manage a proper sleep finally got out of bed at 5.22am! As Tlj says go with your body and if you just have to rest do so. I spend most of the day sat down. I am terrified I am going to start pilling weight on in a minute as my appetite has returned to normal and I have put back some of the pounds I lost when I had the 5 weeks of runs! Take pain killers for aching joints. I do get up each day even if I don't feel like it, a shower is always a little boost. I have only had one day where I really couldn't get out of bed and then DH made me get up in the afternoon!
And so to my evening out it felt good doing something normal. I had a long chat with the teacher who has taken over my class of Year 1 and it was lovely to be talking about the little characters that make up the class!
You will be impressed ladies - on arrival there was a non alcoholic cocktail for the students, I noticed most of the staff had different coloured drinks in their glasses, but I joined the students! With the meal there was water on the table and I had one glass of Rose wine that lasted me all night!!! It was lovely to hold a wine glass and I just kept taking tiny sips the taste was a little strange but I enjoyed the experience! I got DH to put some ice in it when it was half way down and when we left at 11pm there was still some left in the glass that I left! When I got home we sat outside with a cup of tea and I was still wide awake! DH went to sleep outside so I left him and the dog and went to bed. Slept on and off! I wore the wig last night and one of the pupils said, " Oh Miss you have changed your hairstyle it looks much better!!!!!" I just smiled sweetly! So my synthetic wig is better then my real hair??? I couldn't wait to take it off when I got home my head was sweaty but I had managed to wear it for 5 hours! I was much happier with the cut as my earrings were visible and the hair didn't get in my face.
I hope all you other ladies are having a good weekend it looks like you are enjoying some good sunny weather in the UK at the moment! xxx
Rolicarpit - strangely I was told to look out for this as you have fewer nasal hairs and eyelashes the bodys natural pollen filters and to expect runny eyes and nose. I think piriton is a good idea - which remindes me had anybody heared about using claritin for the bone pain. Lots of success stories with it on the internet - I am on my way to get some now!
Glad to say I feel back in the world of the living having turned the corner on the 6th night by actually getting some sleep. I tried a sleeping tablet the evening before but it made no difference and having read about the side effects may not bother next time and just sit it out. Has anyone tried any herbal sleep remedies?
I was so unprepared for the pain side effects of tax don’t think I would have coped without this forum to know it was normal. I agree with Joan it would be great to have a collated guide to symptoms and suggested remedies from patients to save us all having to re-invent the wheel so to speak and spend ages googling our symptoms. Jas I hope you are managing day 6 and soon feeling on the mend. Again the low mood is an effect not mentioned - by my team anyway, and I think is made a whole lot worse by the lack of sleep.
Rosie I am glad you managed to enjoy the show and are escaping out again tonight. I tried a glass of wine last night but had to dilute it as it burned my mouth. The effects were also very rapid! Perhaps try a spritzer with plenty of ice?
I sympathise with you Booksandwine about the sore mouth (and throwing out all your nice bras!) I don’t know if I have been lucky or found a cure but I found a mouth care advice sheet from one of the hospitals (Royal Brompton?) that recommended making a mouth wash with 250ml water and ¼ teaspoon each of salt and bicarbonate of soda. Use before and after meals and every few hours. I had the glass by the sink and rinsed regularly getting through the 250 ml by the end of each day. All I can say is my mouth and throat immediately felt soothed and has not been a problem since. Luck?
Cassie I hope you are managing in this heat I can’t imagine how you manage your stairs - I had to crawl up mine on hand and knees at my low point - very painful and it took ages!
Is there a reason everyone is getting their nails painted?! Is it cosmetic or medicinal, and does it have to be dark? I have not had any problems with hands and feet yet although I have noticed my fingernails are a bit achy so have cut them short.
I hope everyone has a good day today - looks like I’m back to being the family Taxi / dogs body but nice to feel normal!
Maybe I'll try some piriton or something and see whether that makes a difference, I've just re read my post which makes me sound a bit of an alcoholic lol .... I don't think I am? I've actually found that a weak gin and tonic doesnt taste too bad at those points when I can't taste anything else. BBQ will be fine, I have plenty of help and it will lovely to see people.