I’m awake too Rosie. Not heat Neuropathy I think my feet shins ankles are sore pins and needles and shooting pain. Took pain killers thought best not to add sleeping tablets as well. Used sleeping tablet last night not a resrful sleep. Man I thought tax one was bad from Friday feel rotten. So over this
I am not sure if its worth it but the 3rd of hair I have left has become a bit shapeless, maybe I could risk a haircut, my hair has always grown very quickly and I suppose it has been a while since I decided to get a crop before the treatment started. I think I will go early before the salon gets busy, I don’t want anyone gorping at my bald patch.
Wildpurl, pleased your TAX was problem free. I joined the select band of ladies who developed the allergic reaction. All happened incredibly quickly but fortunately the nurse was still there and she spotted my face going bright red almost as soon as I started to feel ill, so machine switched off immediately, doctor there, oxygen mask and meds. Put back on low rate of infusion gradually increasing and all well. Next time they will give me the meds in advance so hopefully will be more straightforward. Rather tired as a result rest of the day but had a reasonable night-by chemo standards- and hope to have the steroid induced high energy levels this weekend-looking for floor covering and blind to complete our bathroom, which is nearly finished and looks great and then over to the grandchildren tomorrow so husband can paint their garden house. Oh, and most important, having my nails painted purple again. So far they seem to be behaving themselves. I have been given precautionary antibiotics for oral thrush so hoping no infection this time. Eyelashes just about gone and eyebrows thin and patchy but glasses seem to conceal most of it. Can’t wear eye makeup because makes eyes
Booksandwine, so sorry you are having a tough time. How many sleeping tablets did you take. I’m allowed 2 Zoplicone. Usually take one then another of either it doesn’t work or I walk in the early hours, which I usually do. I also take Piriton anyway at night and think I might add in another. Then I wean myself off the Zoplicone after a few days and only resort to it when desperate, which I confess was quite a bit last time round. Have you tried a local analgesic for the legs? I used Deep heat and massage last time which helped for a while it just warms the muscles but. you could also use Voltoral, which is an ibuprofen gel provided You are not also using ibuprofen tablets.
Cassie, great that you have recovered so well and able to go into work. Oh the horror of all those emails. Hope most of them can just be deleted and don’t require loads of work . Don’t push yourself too hard. My diagnosis was the same as yours except I have two lumps next to each other. I was initially told would need mastectomy but surgeon then decided to try chemo first in hope of shrinking then sufficiently to do a lumpectomy instead. Signs looks hopeful but MRI due a week on Monday, will tell. Hope I get the results next time I see the oncologist and don’t have to wait till I see the surgeon in August. Rosie I. Sympathise with your anxieties. I don’t think you should worry too much about being lopsided, I think they are very careful about that. Have you any idea what kind of reconstruction is on offer. A friend of mine, who I think went privately, had fat taken from her tum, so she ended up with a natural feeling boob and a flatter tum. Bargain. She looks absolutely wonderful, just as glamorous as she was before and that is saying something.
Oh Nellie, what worrying news about your friend. But it may not be as bad as you and she will inevitably fear. The same happened to someone else I know and she was in a complete heap but further tests showed it was OK. But I expect when we are through all this that will be at the back of all our minds. Like you there is no history of cancer in our family, my worry had always been heart disease. But I am now worrying about my two daughters and wondering if there is anything they should be doing about getting tested. I see from Cassies post tat her oncologist suggested they ask for testing but I expect it may have to be private.
Rosie, take the sleeping pills. They don’t guarantee you an unbroken nights sleep but at. Least normally you can get off again. I don’t know how you are still able to function with this chronic lack of sleep. If you haven’t taken them before they might have quite a dramatic effect- I had 11 hours. In our household bins have always been men’s work. I’m not telling my husband about yours. He might get ideas.
Hope everyone has the best weekend they can.
Busy morning. Lots of posts. Well I managed around 2 to 3 hours sleep last night I choose pain killer (useless ) over the sleeping tablet. Ouch the pins pain in my feet. Wondering if I can do anything to help
Thanks Rosie kind thoughts and you Wildpurl I commend you on your energy mine was mon Tuesday wed and bit Thursday by Thursday pm I was rung out. Much earlier pattern than last one. Still roll on last tax on 15 th.
Q running out of food ideas esp breakfast I can’t do toast now and for next 10 days generally weerbix with milk softened in microwave. Plus yoghurt or scrambled egg. Any interesting soft food ideas.
Jj idea for book great as we generally are told what to expect but not how to deal with it. Like it would also be good to get a list prior of suggested prescriptions rather than the energy of asking others on forum etc.
Quiet day I think. Wishing everyone the best.
Nellie agree runny nose is a problem or st least something for jj brochure makes sense with no nose hair but not mentioned !!!
Joan great advice will look into that. I have only taken 2 sleeping tablets over the whole time as not a fan. I got prescription last time as desperate to sleep and break pattern and it did. Sorry to hear about your reaction.
Overall now it’s day time staring to at least feel more alive will shower change nightwear refresh bed sir in garden and try to keep up liquids and take it slow.
Re hair odd I have bum fluff growing !
Wildpurl I assumed steroids for reaction to tax Sometimes all of this makes me realise how much I take for granted or just follow without time to research what we are given or finding out why and if we need it. I only have three days of steroids.
Hi ladies, a very busy morning on our thread!! Rosie sounds like you had a dreadful night, echo what other ladies say and take the sleeping tablets!! I have cyclizine back up anti sickness pills to be taken when needed and can remember my son as a child being very car sick and he was prescribed them, he used to hate them as they knocked him out for hours!! Well I find if I take one just before bed for a couple of days after chemo they do the same to me, no effects next day either!!
And regards where the cancer comes from as you were saying earlier,I also have no family history of any cancer, am 52 years old, never smoked, was very fit and always busy and on the go, quite healthy diet, fresh air etc, had menopause at 51, no Hrt, mine is nit oestrogen positive but HER2.
Hope we can all have a fairly decent few days of limited side effects!
Just to hi-jack this thread for a minute…
I’m interested in the discussion around eyebrows, eyelashes and runny eyes. I had FEC100 + Tax in 2009/10. Lost all my eyebrows and eyelashes towards the end of Tax. Also had runny eyes throughout.
Runny eyes improved a bit but was told by an ophthalmology consultant (who I saw about something else) last year that it’s the 5FU (the “F” in FEC) that irreversibly makes the tearducts shrivel. It’s not that my eyes water more, it’s a case of the tears not draining away as efficiently as they used to.
My eyelashes soon grew back after chemo.
My eyebrows, which were fair and never very lush, did not grow back well. So, last year (over 3 years after chemo) I opted to have semi-permanent make-up (‘tattoos’) applied - one of the best things I’ve ever done, makes me feel so much better about my appearance after having my confidence knocked by disfiguring surgery, chemo hair loss loss etc. Not a cheap process but worth every penny (mine cost £375). Sorry, but £150 sounds VERY CHEAP. I think you probably get what you pay for and it’s worth shopping around for someone you trust who is thorough and is registered with the local authority. Happy to recommend my therapist (who was in Gloucestershire) if anyone wants to PM me. I shall be going back to her in a few months’ time for a top up of the colour (a shorter, easier therefore cheaper procedure) as the effect does not last for ever.
Best wishes to all of you.
Rosie, that sounds like a lovely weekend??? your Dh must be very tired now after all the last minute school organising to do ready for new term, it will do you both the world of good to be spoilt for a few days and even better with a sea view!! Really enjoy it and try and put thoughts of surgery etc to the back of your mind - I know it’s not easy. And a tipple definitely in order and you can get in some practice for your sons wedding! Where is the wedding by the way? X
Rosie enjoy the dinner and break. Re recon like you I wanted immediate as am going down diep team route advised while they used to do immediate and then rads risk of shrinkage and lumps is over 60 to 70 percent so while current brochure info gives you impression you can get immediate they are preferring delayed. I’m aiming six months. Ps oh got me natural yoghurt while out. He’s also knackered
Confess Rosie I has a meltdown as my consultant led me to believe immediate so got pxxxxed off when met with plastic surgeon and got full story.
Hi ladies have been told reconstruction can not take place until a year has elapsed because the radiotherapy can destroy the new tissue plus they want to be sure all the area is free of cancer. I got my proper prothesis now and it has made a huge difference. You will be amazed how heavy and big boobs are! Ladies don’t worry about the next bit we are at the end of chemotherapy and I for one want this bit over.
Louise I will be honest and say if I get told that I will push them for immediate and to hell with results lately I seem to feel info I get is changeable and conflicting. Stubborn but I refuse to wait a year.
Grumpy today lol. !!!
Think in frustration mode
Booksandwine I completely understand your frustration it’s very annoying to get all this conflicting advice. Good luck to you sometimes you just get fed up and need to make a stand but just don’t put your health at risk. The fake boobs are good . X
Hi Rosie, I’m also awake early. Took one sleeping pill last night and unusually slept till 3.30. Bit too late to take a second since don’t want to be too dozy for grandchildren, so wide awake by 4. I reduce to half dose steroids today so hope will give me a bit more energy without the irritability which my husband bore the brunt of yesterday. Your cottage sounds lovely, great to have something to look forward to. Hope the constipation breakfast works… I have trying to prevent the problem with tablets, prunes, sprinkling of all bran, nibbling on figs, hibiscus tea, etc but without success so far. So it may have to be the go- cake again.
Re the peeing issue which several people have mentioned, my daughter, who is a diabetes specialist, says that temporary diabetes is a known side effect of steroids. She was quite worried when I mentioned going to the loo a lot and being constantly thirsty. I guess the key thing is whether it continues after the first few days when we have had all that fluid pumped into us plus the steroids to reduce fluid retention- very effective so far I have to say. Also I find I have a very dry mouth and have to drink a lot anyway. But I have never mentioned going to the loo a lot to the oncologist, there always seemed such a lot of other side effects to talk about. Perhaps we should.
Like others I have runny nose, especially when eating and runny eyes although they have not been as sore yet as with FEC. My oncologist prescribed eye drops which have helped. But it means I have not been able to use any eye makeup, even while I still had eyelashes. Meanwhile other parts of me, like mouth and skin are drying up. I love the Moo cream, which is just as well because I now have 5 pots! My first re-order for 2 to Amazon did not register. - and there was no confirmation email so after a couple of days I reordered, opting for the slower free delivery. Next day two pots arrived, but I had been charged p&p, which was annoying. Two days later two more , this time free delivery. Most annoying but really can’t be bothered to complain and send them back. I shall pass at least one of them to my daughter who has very dry skin so won’t be wasted.
Booksandwine, I was also very grumpy yesterday. Disappointed that I didn’t get anything like the same burst so energy as last time so although in the end I got a reasonable amount done I felt exhausted and had to sleep after lunch. Husband made the mistake of saying I seemed a bit down so he got it with both barrels! Very unfair because he has been very supportive and does most of the cleaning as well. So I feel very guilty. Anyway, at least the steroids made a good excuse.
Starting on the injections to boost the white cell count today the antibiotics to prevent thrush so hoping won’t have recurrence of neutropenia. Have sore throat but no temperature so hope not a bad sign. But not very confident in my mouth thermometer which keeps reading abnormally low. Does anyone use an ear one which I think are more accurate?
Hello Ladies,
Sorry to hear some of you not too well at the moment and feeling frustrated regarding the timing of reconstruction, best of luck with that.
I have watery eyes at the moment too for the last couple of days, it seems one thing gets better and something else starts. Thrush in mouth has gone and I have another dose of meds ready for the next session just in case on the 8th, so fingers crossed. Had the hair trimmed yesterday, (Not cut price !) not looking too bad, grey not too prominent either, all in all a sucess. Very windy tum at the moment and uncomfortable, not sure if thats yet another symptom, I also pee’d a lot after TAX for about 5 days and started worrying that I was begining to be incontinent, then of course I was admitted put on antibiotics and that seemed to cure it.
Hope you all have a good day today X C
A bowl of porrige and strong black cofee, it seems to work for me…
Morning everyone, my 4 th day side effects from Tax have not kicked in yet like last time, so almost waiting for them to start!! I also feel very grumpy and yesterday extremely angry with everyone and everything, don’t feel much happier today either! I feel in limbo, can’t book a holiday because of treatment, don’t know same as you Rosie what surgery etc, always looking out for people with germs, constantly handwashing and not being able to eat what I want!! I could go on and on but won’t!! It’s all wearing very thin now this bloody illness- rant over!! X
Lovewine I completely get it I hate that I can plan nothing and would love a change of scenery Yep want this to all be over I ache everywhere hungry but everyone tastes awful and hurts. We are allowed to rant
Thanks Rosie and booksandwine think it does us good to have a good rant! Enjoy your lunch Rosie, hope you can stay cool! Booksandwine enjoy your day as best as can, a change of scenery would be so nice! Hope the aches subside, I have a horrid " rushing sea noise" in my ears which I had last time too which is very odd! And yes positive thought I still have few side effects!! Will try and pull myself together and have a better day!?