That was a cracker of an April Fool, Louise! So good to see your sense of humour hasn’t been supressed along with your immune system!
Jo - I hope you start to feel better soon.
Diane - you look totally gorgeous! Thanks for your good wishes. I start on Monday after portacath tomorrow.
Mandy - that must have worried you. I hope you manage to get to the bottom of it today.
Jackie - I’m pleased to see you are on the same regime as me. I’ll be following your progress very carefully! I hope you manage to stay out of hospital this time. Your trip to Brighton sounds wonderful. I had my hair cut extremely short - like an inch on top, shorter down the sides. Since then my wig has been far more comfortable - and even better since I washed it. It had begun to slip backwards, feeling unstable, making the fringe too short and looking silly, but since the wash it hasn’t moved at all. I even wore it yesterday to go walkies with the dog. It was quite windy but it stayed put and didn’t move.
After all the tales about bottoms, mine started to be very sore a few days ago and today it feels even worse (and I haven’t even started yet!) I had an appointment with the oncologist this morning so took the opportunity to mention it to him. He asked a nurse to have a look. Very undignified, but she said it looks fine, and to use Sudocrem as this soothes and also acts as a barrier against germs. It was already on my shopping list after recommendations from several of you Valentines.
Heres a little tip my wig lady gave me though I havent tried it yet.
If you have some hair left and you feel like wig is slipping give hair a little spray with tepid water this should help to keep wig in place.
Jackie xx
FEC-T, FEC cycle 3, day 6
(Kent Oncology Centre - treatment at both Maidstone and Tunbridge Wells hospitals)
Afternoon Valentines!
Mandy : the cording I have had went down the arm towards the wrist – but definitely had a “twang” as you describe. Physio and exercises at home helped. I hope you’ve been able to contact someone today about it and get some reassurance.
Linda : good luck with the Portacath tomorrow. You’re nearly there!
Jo and Jackie : we’re running parallel this time round. And the tiredness has hit me much harder too. Seems to be a feature of cycle 3. That and the cold! Eyebrows and lashes have thinned a bit, but are hanging on…
Karen : hope all is going well today. Lots of us are looking forward (weirdly) to your reports of first “T”.
FEC-T #3 day 7
Afternoon Valentines.
Im posting from my phone and in bed so just a quick question if I may?
Number 3 has been a tough one but all round but I have 1 particular question. I’m on day 4 of the injections (if that makes a difference to any of this next question). My feet and ankles have been swollen since yesterday afternoon. Has anyone else had this?
Funki x
Looking back at some of my old poems, it’s amazing how they have a relevance with our situation today. This one was inspired by a scene in one of my all time favourite silent films - The Cabinet of Dr Caligari - I was gobsmacked on reading it through as the symbolism is so obvious. See what you think.
Defiled
Gentle dreamer on snowy bed, visions of light surround your head: but what gaunt spectre gazes through, his shadow dark cast over you? Do not waken, slumber on: for over roof tops he has come. The walls are scaled their purpose failed, your purity has been unveiled. When you waken, fresh as dew, will the sunlight shine on you; and will your mind still tell you lies? Or will the shadow cloud your eyes? Forget your plight shut out the light. Hide the spectre from your sight. Think only of your snow white bed; then you won’t know that you are dead.
Once I had a shallow pool where silver Minnows darted through the sparkling waters cool; and where the rushes parted, iridescent Rainbow Trout shimmered in the Sun’s pure light, which shone amid the Willow trees and glinted through its trembling leaves.
Now my pool is dark and deep with myriads of pleasures, where Manatee and Narwhal sleep, concealing secret treasures. Its milky waters form a shroud to veil the Sun’s rays in a cloud. No light can penetrate this lair of fabled creatures, wild and rare.
Hi all day 1 Tax 1 !!!
just reporting that all is well , no reactions & infact was better than Fec , I got that awful " fumes " oozing from my skin& stung my nose & eyes , didn’t have any of that so far & NO red wee wahoo ! It took an hour to be administered but by a bag rather than injection so I was free to walk about & grab a cuppa , I was also offered reflexology so I tried it & it was heaven struggled to keep quiet for 20 mins lol but I highly recommend it , very relaxing & made chemo whizz by !
I was finished by 10.30 , I mentioned my sore veins so the nurse gave me a saline drip after Tax for 15 mins to flush the vein & hopefully not aggravate it too much . Had 2 attempts finding a vein & using a cannula that they use on babies as my veins are so small ! Peppa pig hand warmer was good tho !
Feeling ok now , just had a nap , but was woken up by my little girl coming back home from grandmas with a broken foot ! bless her she is a bit of a drama queen but was so upset , two invalids together on the sofa ! She fell " off" a football ?? , start of the hols aswell !
Hope everyone is ok , I agree FEC 3 was my hardest especially with tiredness , I will keep you up to date on SEs as its early days , sorry for no personal replies my concentration is not great , although not sure I can 100% blame chemo for that ! Lol
much love everyone x
Glad to hear from you Karen, I’ll be following your progress with interest so I have an idea of what to expect next week. I have a bit of foreboding as I booked patient transport already. Sounded like a young woman (20s?) Didn’t speak very clearly, could be foreign and might not have understood me. But it’s booked - I hope!!
Hey, well done Karen!!! The steroids must have done their job keeping the infusion reactions at bay. I have my first one on Tuesday. I think it’s the possible reaction I am most worried about.
Sorry about your little girl. She will no doubt enjoy being an invalid for a short while…
Jackie, interesting to read about your eyebrows eyelashes, although I’m on the same T but different C and not H (hope that makes sense!) I’m dreading mine leaving me. I’ve already lost a lot of hair on my head so only hope I can keep them pair. Your first 2 cycles how did you feel after your low days? I’ll be keeping my fingers crossed for you for staying out of hospital especially for your birthday.
Poor you Linda you’re coming out in sympathy with everyone, first off with a stinking cold and now troubles with backside. There’s nothing dignified with this bloody thing is there? If I don’t get chance to log on tomorrow I’ll be thinking of you for when you get your porto thingie fitted. Just remember not to sneeze.
Hope today went Ok for you Karen and you feel a little more relaxed after the unknown. I feel ready for bed now so I’ll bid you all goodnight xx
FEC2 Day 13
Sorry about your feet Funki. That’s oe problem I haven’t had. Not been able to talk to anyone about the twang under my boob yet as woke up with a very painful arm and a cold. BC nurse sorted a visit to hosp. Just to watch my temp and keep warn a nod hydrated for sniffles. They’ve booked me in t have a line fitted next Wed before FEC3. Hope Ive done the right thing but am worried about Lymphodeama.
Stayed over with friends last night and ahead a glass of champagne! Am shattered now and feeling FECCY in spite of it being meant to be a good day.
Deep poems today Kath but full of feelings. Can’t find how to accept friend requests on here. Will keep trying once I’ve had a snooze.
Well done Karen, sotohe so hear about your little girl. Hope she’s not in too much pain.
MandyX Zzzzzzzzz
Funki - this won’t help because it relates to Docetaxel, but my papers say a side effect is fluid retention, especially ankles and legs. Could it be that? Have you rung the chemo unit? Hope it settles down.
FEC2 Day 13
Sorry about your feet Funki. That’s oe problem I haven’t had. Not been able to talk to anyone about the twang under my boob yet as woke up with a very painful arm and a cold. BC nurse sorted a visit to hosp. Just to watch my temp and keep warn a nod hydrated for sniffles. They’ve booked me in t have a line fitted next Wed before FEC3. Hope Ive done the right thing but am worried about Lymphodeama.
Stayed over with friends last night and ahead a glass of champagne! Am shattered now and feeling FECCY in spite of it being meant to be a good day.
Deep poems today Kath but full of feelings. Can’t find how to accept friend requests on here. Will keep trying once I’ve had a snooze.
Well done Karen, sotohe so hear about your little girl. Hope she’s not in too much pain.
MandyX Zzzzzzzzz
FEC-T, FEC cycle 3, day 6
(Kent Oncology Centre - treatment at both Maidstone and Tunbridge Wells hospitals)
One for Funki :
Sorry not had the foot and ankle swelling (day 2 of injections for me) but am generally very much more “puffy” at the moment than after previous 2 cycles. Face and hands in particular. I was putting it down to the steroids. Probably a wrong assumption though!? Gentle elevation might help? Hope you see an improvement soon.
Glad to hear that today went well Karen , but sorry to hear about your daughter.
Linda , I’m with you, it’s the potential reactions to Tax during administration that are scaring me the most at the moment, Good luck for the portacath fitting tomorrow, no sneezing!!
Haven’t had the foot swelling Funki , hope it improves soon, sounds very uncomfortable.
I’m feeling much better this evening, have managed the whole day without a nap, think it’ll probably be an early night though, had my last anti-emetic at lunch time, that always seems to coincide with starting to feel better, I don’t think they help with the general bleugh feeling after chemo.
Funki,
I found this: http://chemocare.com/chemotherapy/side-effects/swelling.aspx
hope it helps. It sounds very much like fluid retention - but I would phone chemo nurses and double check. Anti-sickness tablets can cause it as well as some chemo drugs (not sure what you were on so couldn’t check them partcularly) - my mum had terrible fluid retention when she was on anti-sickness tablets. However, fluid retention tablets can cause constipation - you may well rattle!!
I am feeling a little low - I have been reading everyone’s posts and everyone seems to be moving along - I feel static at the moment. It’s another waiting game for me to find out what will be happening with my chemo and anti-nuetrpenia injections. I hope I can have chemo on Friday but daren’t get my hopes up. My OH is just off to buy a bottle of wine and I feel a night in front of the telly with a glass in hand is on the cards.
On a more upbeat note we met a little cocker that was 2 weeks younger than my little fella and they had a ball playing chase. I am surprised he hasn’t flaked out they had such a long time playing together it seemed a shame to separated them (I really wanted to steal her, but I thought the owners little girls may get upset).
Alison xxxxx
Just a quickie , I too was worried about a reaction & asked the nurse about it & she said its not very common , that’s why the steroids are taken day before & morning of treatment but if it was to happen then its easily resolved they simply stop for a bit then give it to u more slowly , she didn’t seem phased about it at all & made me feel a bit better
hope you get chemo on Friday Alison & that glass of wine sounds good !
Karen x
Hi all
Funki I have had the swelling of the feet since day one, and oncologist has said that it is one of the side effects of FEC . I was advised to elevate my legs which does help a bit. It really is un comfortable and they really hurt when I walk. I am seeing oncologist again tomorrow and I wil ask again if anything else can be done pill wise not that I want to take any thing else and will Let you know tomorrow what he has to say.
Annabelle
Thank you thank you Ladies. I rang the chemo ward but I got a cleaner I think. She went off and asked a nurse and came back and said “she said go to A&E” Obviously busy tonight. I am going to take Annabelle’s advice and elevate my feet. If there are no improvements when my DN comes tomorrow morning to flush my PICC then I will get it checked out. (Obviously if things get worse in the night I will do it sooner) Thinking about it I have eaten pretty crap food over the Easter Holiday ( Take outs) and not done much so I dont suppose any of this has helped. I have also been taking Diclofenac for injection bone pain (which I see can have a swelling SE) I think it probably is something to do with the steroids as I have gained half a stone since Wednesday
Thanks again X