Thanks. Michelle & Fiona. It sounds as though we are going through much the same experience. I’m relying on paracetamol & ibuprofen for the bone aches but the effect doesn’t last long. I’m really tempted to use the codeine I was given after surgery & didn’t need but I’m wary of such a heavy-duty painkiller.
it must be devastating that you cannot lift a bag of clay Fiona. Things that make life enjoyable are stripped away but only for a while, I hope. I’m surprised that your nurse didn’t immediately realise how distressing extra pain would be. I’ve heard pain downgraded to “discomfort” but from inside my skin it’s pain.
I’m grateful for the encouragement about next docetaxel, Michelle. I’m hoping next time won’t be so bad, if only because I’ll know what to expect. Thanks for your good wishes, Gygi. Keep telling myself it’ll be better tomorrow.
Thanks for thinking about me, Gygi. Docetaxel is evil stuff. I’m just beginning to feel a little better after days in bed. The first two days were ok and then it was as though someone was jabbing knives into my joints all the time. Too weak to get up or eat. I did wonder if it were supposed to be this bad & dread further 2 courses. The fatigue never lifts.
You’ve had a horrible experience with this stuff too, Gygi. I hope that you gain in strength; the weakness is appalling. With luck, the alternative chemo you will be getting will be less harsh. I do hope so. It’s miserable having your treatment extended like this. Thinking of you.
I’m so glad about your ultrasound results, Michelle. What a relief! This cruel illness never lets us off the hook but this is very good news.
Your reaction to docetaxel, Sally, may be completely different & I don’t want to put you off. Sorry if I’ve been totally negative about it.
Poor Fiona, your toes must have been agonisingly painful. As though there isn’t enough to deal with! I gave a little cheer when I read that you had insisted on a proper anaesthetic. The medics may be dealing with the pain of others ever day but they do not feel it themselves (they probably couldn’t do their job if they did).
Crummy week. Got to get better.
I am starting docetaxel on Wed & wondered if anyone has any tips? Do I take the laxatives on Tues like I did with FEC? I am on the May thread so ahead of most peeps I think. I have the dark nail varnish ready. I was told constipation would last through chemo but maybe they just meant whilst having FEC. Thanks in advance.
Hi I am also on chemo 5 next week. My first Docetaxol, not sure what to expect, especially with double steroids. I am having 8 cycles of chemo then surgery, then radiotherapy, then I get the hormone tablets. I am still trying to get my head around all this. It does help to read how others are surviving the whole darn thing. Thanks
Fantastic news Michelle. I bet you need to get some sleep now as i can't imagine you got a lot last night. Perhaps a bit of a celebration first though.
So sorry to hear that Michelle and i hope you get the result quickly. They thought i might have a problem with an ovary too but my ultrasound came out as perfectly normal. Hopefully yours will come out the same.
At the start of this i didn't want to tell my family until i knew all the facts so i get where you are coming from. we don't wont to worry those we love unless it is necessary.
I will keep everything crossed and will be thinking of you. I hope you have a way to let out the anger and frustration even if it is just some where to scream or a pillow to punch.
All the best and i am sending you a big hug
So sorry for this, Michelle. Cancer is total cr@p and only those going through it know just how cr@p. Thank goodness you are going for the ultrasound scan tomorrow. Hope the results are quick and good.
It’s hard to keep stuff like this from your parent
Happy birthday last Thursday, Michelle. Your “almost normal” really pins it. I felt the same the first time I wore my wig in an ordinary setting, like acting a part. Glad the cold cap works for you, Christine. I’m longing for even a little fuzz to return.
Thanks for the kind words about my treatment. Yesterday was my first docetaxel dose and it hasn’t been too bad so far. We sat on the ward waiting for hours for the stuff to arrive. One poor lady had had a long journey to be there for 8.30 and at past midday they were telling her to come back in 2 or 3 hours. No having nausea is wonderful, worth all the pills rattling around inside me. Only day 2, though, so I won’t get too excited. I’ve discovered that dark nail varnish shows every chip!
I hope the book I mentioned isn’t a disappointment. I like the validation it gives to the way I feel. It has motivated me to ask for counselling help from the charity that operates from the hospital site. I can’t always keep a lid on how I feel and I need help. There, admitted it.
Hope your docetaxel went well, Gigi.
I did cold cap and have kept the majority of my hair. If you didn't know me you wouldn't know about the hair loss. I had assumed i would lose a lot of it so ordered a scarf and silk hat that have never been worn. I will probably drop them off at the chemo unit and see if someone can make use of them as they are unused. I do admire all those who seem to have dealt with the hair loss so well. I don't thnk it is vanity but just the want to remain ourselves and hide the internal turmoil without it showing on the outside. I have the horrid marks on my arms that i cover when i i am in company but that is a bit easier than hair loss. I have had the odd take away or meal out but i have been careful on what i have eaten and where. I am not sure at what point i can take things a bit more easily. A few week yet i think.
I think some drugs are done weekly as a general rule like the paclataxel and others and done three weekly like FEC and docetaxel but I think even then there are exceptions to this pattern. How the cancer presents and what we have been through before I think also plays a part. There do seem to be so many different protocols and we all seem to have some tweak from each other. I was thinking about last time i went through this at the age of 34 and with a 4 year old i thought i might night see grow up. I worked and made life as normal as i could for everyone elsse. This time as a 54 year old with a 23 year old daughter i feel more exhausted but less worried about the future.
Sorry i seem to be waffling on today. Enjoy your holdiay Dorabel. Cornwal was where i had most of my childhood holidays and i am sure you will have a lovely break.
Hope all is ok with you Gygi.
I’m really grateful for your post - thought I was going bonkers with the way hospital wears me down, even when the news is positive. Re. the holiday, I’m off to Cornwall for just over a week. It will be ok if I can get easily to the nearest A&E, I take my thermometer and my picc line has been removed. I can see why sun in Cyprus could be a problem but it’s horrible having to cancel or put plans on hold. I hope you do get a lovely holiday with your daughter in the spring. Tennis and home-baked rock cakes sounds great for now.
A slim book, ”Emotional Support Through Breast Cancer”, arrived from amazon today. It’s not much bigger than the booklets you get from the hospital and I read it straight through in one go. It describes things that were true for me, like the wall of glass that was suddenly between me and the world after I was diagnosed. I recognisd feeling obliged to “put a lid” on my true feelings when I am asked how I am. Only my opinion but I think I am going to go on finding this book useful.
Hope it goes well for all of us next week. I now have a gruesome dark-blue (diy) mani/pedi to keep the sun out when I get docetaxel tomorrow. Guess I need to get more practice with nail varnish.
Glad you had good news from the oncologist and yes hospitals are a nightmare. You think you have all the information you need and they know what they are doing and you when you get there nothing ever goes to plan. If we are told we are going for a blood test they don't say what they taking for unless you ask and when they can't read the consultants writing and ask what it is I have never have a clue.
Where are you off to on your holiday? I was warned to still keep my skin covered and be wary of the sun so my plan on going back to Cyprus are put on holed for now. Will probably wait until the spring and go somewhere with my daughter.
Feeling ok today so i have just baked some rock cakes that i have made with dried apricots. Smell gorgeous but haven't tried one yet. A day watching the tennis and eating rock cakes for me i think.
And thanks Michelle. I will still be around keeping you all updated on the recovery from chemo and also how the Herceptin and Zoladex injections go. Herceptin every three weeks and Zoladex every 4 is going to an interesting one so my fridays will still not be completely mine.
You got to the end of it, Christine, and that’s great. Chemo is a taxing experience, so I’m not surprised you are feeling unexpected emotions. You may well have different emotions in the coming days. I hope everything goes well with the DIEP. I’m glad the CCS cream is helping.
I saw the oncologist today for pre-chemo checks. He was running the clinic on his own, so there were long delays. Hospital infantilises me I wander round looking for where I am supposed to be, unable to answer questions like “is your blood being tested for vitamin D?” (how should I know?). I came home exhausted after hours of sitting about waiting and worrying. All this obscured the fact that the news about my progress is good. Whatever emotions I felt today, this is what really matters.
Best of all, the holiday I’ve booked between last chemo and first radiotherapy got the ok.
Second best: earlier in the week I got shown how to put on my wig properly so it doesn’t look like a busby perched on the top of my head. They don’t make fine flat wigs, so mine is quite bushy but at least it looks like hair.
Well that was my last chemo and i am no feeling as elated as i was expecting. Not sure why. I have felt very emotional and even started crying just before the infusion finished. Perhaps it will just take a few days to sink in. i did speak to a lady a few weeks ago leading up to her last chemo and she was talking about it as feeling like being desperate for a wee then finally being allowed to go. I assume she was talking about the relief she felt. I am glad it is finished and grateful to have got to the end despite the side effects. I am pleased by most of the support i have had from friends and those on here and i will say thank you now for all your support. It has been such a help talking to those with the same problems.
I am looking forward to getting some parts of my life back to normal even though i now have the thought of the DIEP looming over me too. Determined to start cooking again in the hope my taste will return quickly and to start on gentle walks now my feet are much improved, thanks to the ccs cream.
I hope the day and weekend goes well for everyone.
The problem i have with weekly paclataxel is that no two weeks are the same. i do seem ok on the day of treatment and the following day and then all the side effects kick in to various degrees. This week it knocked me for 6 on monday and for the first time since school days i had to give in and spend the day in bed. It started with diarrhoea for half an hour to the extent i couldn't leave the loo but the worse bit was i was completely drained and felt queasy. I hadn't taken any anti sickness drugs before yesterday as they weren't needed but every time i sat up i felt dreadful. On the plus side i have had it confirmirmed that that was number 10 of 11 weekly infusions so only this friday to go. Then on three weekly herceptin injections which hopefully wont be a problem. Also will be on Zoladex and a tablet hormone treatment Letrozole but i think that will wait until after DIEP.
Feeling so much better today. A good day after a bad one does make you feel so much better.
Great your counts were back to normal Gygi and you got the chemo. Observation times do go down dramatically after the first one. I felt like i was pasing the room like a caged Tiger by the time they finally let me home after that first one. My fourth infusion of herceptin etc was a half hour for each and a 10 minute flush inbetween.
All the best to everyone and hope you all have a good week.
hi Michelle I’m doing ok. I had chemo Thursday half way through yipeeee been told have to have 25 radiotherapy sessions after.Im suffering with smells this time .Every month is a step closer to this being over.christne I would get a cleaner mine is my son bless him I have two fantastic kids who look after me so well
Sorry to hear about the blood counts Gygi. I think we are all looking for an end goal so any delay is such a mental thing. Any thing that doesn't go to plan puts us all in a spin.
I was told by the oncologist that my 12th paclataxel would be dropped and she discounted dropping the dosage of the chemo. I have just thought about todays chemo and realise the dosage was dropped. I wasn't in the right mind to process and question it at the time, having been filled with pre meds and tolerating the cold hat. Now i am wondering if she changed her mind and i am doing the 12th dose but just a reduced dose on the last three. Can't do anything until monday when i will be chasing around to see if i can find what my records have on them. Feeling totaly out of it tonight when usualy straight after chemo i seem well due to the steroids etc of the pre meds but crash sunday evening. All a bit odd.
I have also realised i need a cleaner for after the DIEP. I was brought up to do it all myself but have been warned that if i do too much i will end up having to have more surgery. My husband never notices mess and is always puting things off so i think a cleaner is needed.