Id love to contribute, and have a very good friend who is a year ahead of us all who has kept me going with her funny stories. Let us know how we can join/find you on facebook. I agree totally I spent 4 months at sea until i forund this forum. It does not seem fair to keep it to ourselves.
Wildpurl I too get very stressed about the blood, I really couldn't stand a delay at this stage.I have just taken 2 steroids in preparation for tomorrow 2 to take in the morning. I wouldn't make a decision about the job until you are through chemo it makes us irrational. Good luck for Friday!
Cassie you brave lady going by yourself!
I agree a holiday would do you good something to discuss with the nurse and hopefully plan around it. I am glad you are feeling so much better but I wouldn't rush into the office because we do tire very quickly! xx
I attended the radiology appointment today (on my own Rosie14) I could not ask my daughter to attend because of her work commitments and she, bless her attends every chemo session with me. plus she had been running up and down to the hospital over the weekend to see me and bring in my injection for the bone marrow problem at 11pm. (Don't ask me why the hospital could not sort it out, different depts I guess.)
I was told the oncologist had referred me a little early, the registrar was younger than my daughter she is 25 but looks 15 !!! The appointment was a bit of a waste of time in my opinion it seems my McMillan Nurse will contact them, UCLH when my chemo is finished, then we will have a planning meeting (I thought that was what today was going to be, I was armed with dates for a possible holiday at the end of the chemo). My eldest daughter, grandson and her partrner have booked a holiday in Devon for a week and have kindly invited me to join them if I am well enough, I am sure it would do me a world of good, a change of outlook, I love London but the sea air would be great.
Nellie, I know what you mean about the pain its been abdominal pain, chest pain and joint pain for me the chest pain and abdo pain only started with the start of TAX, I am not one to complain to the doctors but had two babies with no pain relief but this feels worse. Nails still stripy but intact the almond oil sems to be doing the trick. The hair is still thining but not too bad the comb over and hairspray still doing the job.
I must say I am feeling much better on day 8 of 1st TAX I am very tired, but this to be expected but most of the other symptoms seem to be improving, long may it last.....I might even be able to go into the office for a few hours tomorrow or Friday, we will see.
Hi Louise glad your blood is ok, they don't let me know I spend the whole day hoping they won't phone to say otherwise. No news good news so I am off for number 7 chemo, number 3 Tax tomorrow.
I like your joke Louise!!!!
Hi Nellie sorry to hear what a bad time you are having with pain, fancy giving you gas and air!!!! How awful to suffer such severe stomach ache I do hope that you ladies that have had so much pain this time will have an easier next session. Take each day at a time ladies and remember its not for ever although it certainly feels like it at the time! x
Cassie you sound as if you have had a real time of it. I am glad you have been allowed home and hope the thyroid issues are resolved quickly. I don’t envy you more tests though. I think you are incredibly brave attending your radiology appointment I honestly don’t think I could have managed that soon after treatment. My chemo brain certainly would not have remembered a word that was said!
Now someone else has had to call an ambulance I will admit to doing the same on day 4 (feel v embarrassed I could not manage the pain!?) - I was in such agony in my stomach - perhaps the same sort of spasms as Jacki is suffering? I could barely breathe and as I did admit to - had a high temperature. They could not find a vein for any morphine so gave me gas and air - very reminiscent of child birth but hurt more! I was kept in for obs and the pains and temperature subsided a little so they sent me home with tramadol and zopiclone. Unfortunately my oncologist called later in the day to say my bloods were unusually low for day 4 and that I should not take any meds other than paracetmol so had to suffer the back and leg pain the rest of the week!
Jackie I am sorry to hear your pain is bad - I found I too was scared to take the pain killers just in case it masked an infection. Now I know others have reported their temperature rises over those first days I think I will be a little more relaxed about it next time and take the pills. Here in Wales we don’t get the GSCF but an alternative single injection of Neulaster, 24 hours after chemo. Does the same thing with same type of side effects ie bone pain. They teach you how to give it to yourself so you don’t have to have the nurse coming round each time! My taxotare comes in a clear drip bag the same as the saline and took an hour to infuse - don’t know why we all have different things?
Lovewine I hope the panic does not overtake you. I grew up with a medical family and even worked in a hospital for a while so have always found them a comfortable place to be - until now - my heart rate shoots up on arriving in the car park (could be anxiety about finding a parking space…..!) It is not a nice feeling.
Joan I think you did incredibly well to deal with the sitting down comment so calmly my temper seems to be so short at the moment I think I would have been rather rude!
I am muddling through the days still incredibly tired I don’t know how some of you are managing to work. Settling in to a bit of a routine of a 3 hour lunchtime nap followed by 8 hours sleep in the night. Either my body needs to rest or it’s trying to make up for 10 days of virtually no sleep at all!
Good luck for your treatments Rosie and Lovewine, after this have you both got only one more to go? I can’t believe we are all nearly there. Nothing can be as bad as the chemo!
Oh dear silly me jos I completely missed read. I must visit the optician when this chemo is over! Indeed Breast Cancer is not a lite cancer, no cancer is lite! But I agree people do seem to be relieved when they know it is breast cancer I have. Mine is grade 3 invasive ductile but I also have Paget's disease aswell so I have to have a full mastectomy!!!!
Have a good evening! x
The phrase was "cancer-liTe" rather than "cancer-liFe", implying my cancer was not as serious as others so I have got off lightly! Some people really need to think before opening their mouths. I am realising that a lot of people think of breast cancer as something that is just treatable nowadays and then you get on with your life. Oh were it that simple!
I can imagine why you would be firm with your daughter. I totally understand that everyday life goes on with all its minor frustrations but cancer really has changed my outlook on a lot of things and has put things in to perspective. Sometimes i just want to say "really, is that all that you have to worry about?".
Day 10 and I have definitely turned a corner. Felt much brighter on waking, walked my daughter to school and then walked to town and back to do an errand. Feel I should probably spend some time resting now but when you suddenly feel better and have more energy you just want to be active after what seems like ages just lying on the bed.
Rosie - wow you were up early! That's quite a drive to Nicosia and an early start you've got ahead of you. I'm very lucky to live within walking distance of the hospital (not that I always walk!). My Tax was one hour only. Your neice sounds such a sweetie - that made me smile. Yes, I find myself a bit sensitive with people's choice of words. A very good and supportive friend said to me the other day "I guess you could say you have cancer-lite". Well, I know there is always someone worse off and I know I would rather have a grade 2 breast cancer than a grade 4 lung cancer but, still, I would really rather not have cancer at all thank you!!! And it certainly doesn't feel very "lite" right now and regardless of what type of cancer it is, it is hard to deal with right now and I have to come to terms with living with the fear of it coming back for the rest of my life. I just kind of ignored it at the time but felt quite cross by her choice of words later. I'm sure she'd be horrified if she thought she'd upset me. In all other respects, she's been very supportive.
Lovewine - good luck with your pre-chemo onc appointment.
Jackie - glad you had a better night's sleep and your temperature is stable. I think I'm not very good at taking my temperature. I have a digital one that goes in the ear and although I try and do it exactly the same each time, I can get very different readings within seconds of each other! Tbh I haven't given much thought to the side effects of the gcsf. On my second cylce I got a pelvic ache for about half a day which I think was due to the injections but everything else I've attributed to the chemo, steroids or antiemetics. I'm now thinking that perhaps the gcsf might be responsible for some things too!
I hope everyone else is feeling as ok as can be expected today.
Another good very early morning from Cyprus! Didn't take sleeping pill as having blood taken this morning and don't want anything extra in it!!!! So 4.37 I got up. I could hear the bin men emptying the big bins at the bottom of the road they start work early! I opened up the patio door to let some air in, the early morning air is lush and the dog could hear the bin men and started her rumblings. I said, "No you musn't bark!" I was worried she would wake up DH who came to bed at 1.38am! He watched the match and then had work to do! Well the dog has gone back to sleep, DH is still asleep and I have just enjoyed a cup of tea.
Cassie I do hope that you are feeling a little more comfortable this morning.
Jos I too have had chest pains and thought I was having a heart attack! Especially as I have some heart problem found from my heart trace before I was going to be given Herceptin, which I now can't have until at least after surgery and only then if heart has repaired.
Lovewine I hope you have a good day. I think we are all guilty of drinking during early pregnancy before we know we are pregnant especiall with the first baby!
Wildpurl it is good to know that our whole group have the end of chemo in sight. I know it is only a relatively short timescale in our lives, but it certainly doesn't feel like it when we are going through it! What a journey we have all had. We should write a joint book, Our Chemo Journeys!
rolicarpit hope all is well with you good luck for tomorrow. I am in tomorrow, bloods willing!
Jackie hope you are feeling stronger as each day goes by!
Hope Nellie is feeling better and bookandwine you ar ok?
Oh Joan what a faff you have to get your blood done! Like most of the ladies on here have said we are desperately trying to control our lives and really can't cope with what seems like inefficiency. I find I can't stand sarcastic comments either and I flew at a work colleague at the talent show last Friday when she said, " It's all right for you Mrs Watts sitting down while the rest of us are having to put everything away!" I told her I didn't like her sarcasm and she said it was only a joke but I really didn't appreciate it! Does anyone else find they are hyper sensitive? I am feeling very sorry for myself at the moment also as DH is so busy with staffing issues for next term and is always on his mobile or the computer. It's a good job I have had a manageable week as I have cooked all the meals and washed up. Won't be able to do that next week! It's a good job my daughter Skypes me 3 times a week at the moment so I can have a good chat with someone! The boys Skype once a week too.
Well my friend is going to sort out my finger nails later today. They are breaking big time and peeling off, even with nail varnish on. I have had to cut them down, they were just getting to a good length too.
My sister in law said that my 16 year old niece has been researching make up for cancer patients and would like to help me by doing my make up for our son's wedding! How sweet is she?
Well it nearly 6.00am here and I have gone from sitting in the dark to sunrise so almost time to make a noise in the kitchen to wake up DH!
Hope you all have a good day! x
So sorry to hear you have had such a bad time of it and that you now have more problems to deal with.
I have had chest pain with the Tax but as my oncologist had said "don't worry you won't be having a heart attack, it's just muscle pain" I tried to ignore it although it's such a horrible feeling it's hard to do. I didn't have a temperature though so didn't have that extra factor.
How annoying that you have to go to an appointment when you are not feeling well. Good luck with it and I hope you get a decent night's sleep in the meantime.
Nice to hear that most of you are faring well and have been able to get out and about.
I have not posted for a few days, I ended up in hospital day 4 of my first TAX, I slept most of the day and not until the evening realised I must have a temperature, I promptly phoned the chemo hotline and was told to phone an ambulance! The hospital were worried that I may have septic shock or pulmonary embolism, because of my chest pain, thank god I had neither. Musculoskeletal pain and not sure why the temparature. I really feel like I have gone throught the mill though, the CT scan has now incidentally found another problem.......an enlarged multinodular thyroid with a deviated trachea, I have phoned my GP as I am not well enough to go out at present and they have referred me to endocrinology, I should hear in a few weeks. I am now suffering with thrush in my mouth and down below and also red raw b crack, I know charming. I have some meds but it will take a few days for them to kick in I am told.
I have a radiology meeting tomorrow at a different hospital as the hospital I attend for chemo does not have a radiology dept, I am not sure I am really up to it but feel I definately do not want to delay anything, the sooner its all over and done with the better.
Now Blackberry wine sounds like just what we all need Wilpurl we will be round when it is ready! My Tax is in a clear bag and it says 3hours on it! Yuk yuk yuk!!!! Does anybody else have it quicker than this?
I've just been out in the car to get some milk from the local Kiosk and the steerning wheel and gear stick were burning my hands I kept crunching into 5th gear instead of 3rd!!!
Hope your new laptop arrives soon.
Jackie I am sat inside with most of the sun blinds down and the ceiling fan going! I am not going in the pool until I have finished chemo I don't want anything else to go wrong!!!
roilcarpit you lucky duck I am so jealous! I still have another one 2 weeks after this Thursday's! I am glad your blood is ok its always a worry!
Thanks for the tip about the cream I will have a look in the local chemist.
jos sorry you had such a bad night I do sympatisie with you as I find sleeping difficult. I took a sleeping tablet last night and I was out twice to the toilet and then got up at 5.30am! Glad you are feeling a little better. I love the comment your daughter said she does sound a sensible child!
Had a terrible night - unconfortable, too hot (but too cold with fan) and not enough sleep. I was on the verge of calling the hospital for advice/reassurance this morning as still feeling bad and then, whilst waiting for my supermarket delivery to arrive first, realised i was actually feeling a etter! The headache has shifted and other aches and pains seem to be subsiding. I still had nausea but remembered i have a whole bag of anti-sickness pills so took one (it does say as necessary on my med card). At last, light at the end of the tunnel, for this cycle anyway.
Jackie - glad it went well and you've been doing ok.
Lovewine - thanks for the headache tip. i am a bit headache prone in general and tbh a couple of paracetamol extra usually do the job but it's great to know about this one for future reference.
Wildpurl - a day's work and then gardening. Hats off to you. I usually grow a lot of veg in my garden but just gave up on the idea this year as I was starting to feel stressed about not getting prep done and seeds in in time.
Booksandwine - thanks for the NZ tips, will check them out.
Rosie - how frustrating! I know that everything seems even more frustratiing at the moment. We're going through so much we just want some basic things to run smoothly. I get frustrated every Thursday morning waiting for the district nurse to do my PICC. "Any time between 10 and 1" (messes up the whole day sometimes). Or on one occasion "I can't make it until 3,30". Does it not occur to them that I may have cancer but I still have a life and responsibilities and school pick ups to do! Grrrr.
Rachel - good luck for your first Tax. The only thing I can say with any certainty is that everyone is different. I know others have found Tax preferable but I'd rather have FEC back. I was only ever sick on the day of treatment itself and then functioning pretty well after that. Tax last week brought aches and pains on day 4 which are only just improving now, day 9. I've had paracetamol and ibuprofen. I was also given tramadol but it made me throw up! I've had nausea for a few days, worse than the FEC, when everyone else seems nausea-free with Tax. I do wonder though if this is more a result of achy stomach muscles combined with a residual cough and a horrible dry throat with a horrible taste in my mouth. Not a great combination. I do agree with the others though that the tiredness can knock you for six. I have never felt lethargy like it. Can I reach over for that glass of water on my bedside table? Errr, no, I'll do in later. As for the nails, i've painted mine a dark colour (currently black). My understanding of the "dark" polish advice is that Tax is light sensitive (you'll see it's in an opaque bag in the hospital) and so the dark polish helps to block out the light from getting to the nails and therefore lessens the damage. tbh, i highly suspect it's just the luck of the draw but i'm willing to give it a go.
Lisa - your "bored of this now" comment just about sums up how i'm feeling. It's my most overused phrase. I said to my 7-year old last night "It's really boring being ill you know" and she replied "yes, i know Mummy, you say it so often it must be true"!
Have good days if you can.
Yes I have Difflam but I can only use it for a few days as then its too harsh. I also have something called Nystan that is a solution you drop onto your tongue when the thrush appears and a cream for the corners of my mouth as they get impetigo in them .... but following this morning Im going to have a course of fluconazole too, although the oncologist said it was more for when you got thrush rather than prevention but anything is worth a try .... I know it seems a small thing to cope with but it's the thing that knocks me the most.
Bloods fine this morning, a little aneamic but not enought to stop treatment on Thurs ... so it's all go for the last bout... you'll all be there soon too
Have a good day
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,