Hello everyone - I am so excited! I just got back from the hairdressers. My hair has been falling out in clumps, so it is all uneven and horrible. Brittle. I never thought I would actually feel each hair follicle on my scalp.
So…called up folks I have know for years who have colored and fixed my hair beautifully. Instead of shaving it all off, they razored it off so there is a look of mild peach fuzz over my head. I can baby brush it but that’s about it. WOW! This means I can walk around the house WITHOUT a scarf. Not beautiful but much better. Even.
Amazing what little things can now make us happy, eh?
Treatment #3 is 4/18 – so I will be ready. Did I tell you all that my younger (well, he is not young anymore) son is traveling over (9 hour drive) to take me to Chemo and take care of Mom. That feels so sweet. I have talked my husband into going to his yearly conference - he definitely needs some relief.
It must be the sunshine and beautiful spring breeze. I also called up an old friend that I haven’t talked to in years. And made a calculated decision this morning to hang out my clothes. I have so missed the breeze and sunshine in my face as I hang them out. It seems to have been such a long winter.
Anyway, wanted to share it all with you. Thanks for listening!
Emily
xxx - take care ooo
Wow Emily
Keep strong lady and know that we are all here for you
Mary
xxxx
Well done Emily!!! I couldn’t believe how sore my head felt either nor how good it felt having it zizzed off and doing peach fluff. i’m having my fourth and last epi today so that puts me half way thru treatment - YAY!!!
Jennifer
Thanks, Mary. I love that we are all in this together – well, I don’t love that we have to be here-- but as long as we are struggling through this, it is wonderful to know there is a whole of us struggling together and helping each other.
Jen - Congrats that you are half way through treatment!!! That is a milestone. I am looking forward to being able to say that – and you are there.
It is a very soft spring morning here. Perhaps it is the gentleness that helps one to ponder and think. Been wondering about leaving my job and going into a part-time one closer to home. To be sure, we would have to live on one salary for a bit to be sure we could do it. But it is very tempting. I am nearing the time when I should be slowing down anyway. There is no big career in the sky for me now. Been there, done that, bought the T-shirt as they say. So maybe it’s time to do something more meaningful. Or maybe I am dreaming. We will see.
To more mundane things, the chemo I get is via IV. I should have complained about it but didn’t last time. The entire time the IV was in it stung and now I can see my vein in my hand and feel it up my arm. It has lessened somewhat since I took off the bangle I usually wear (gold) that my husband gave me ages ago. I am wondering if this is normal. It didn’t do this to the other hand. The nurse was different too.
Does anyone out there have a port and is it really horrible? I have resisted this, although they have not pushed it on me since it reminds me of my father and mother who both has leukemia and had ports that were awful. I just don’t want to go there but if this will be ruining my veins, then perhaps I should. Drs say that it will be underneath my skin, so won’t show. Decisions, decisions, decisions.
Thanks for the encouragement – hope you all have a lovely day no matter what it holds for you –
Emily
xxx
i am so sorry re parents and ports experience
my dad died of colon cancer - a too late dx because he was a creaking gate re tummy. one of those blokes who winges re a cold but he dealt with cancer with huge aplomb and dignity… and he was 78 and everytime i think of him i smile.
my sis has done this too- dx a year almost to the day before me. same invasive lob c… and she is fine, looks well bacvk at work after a year. her veins ended pooh. i have lovely veins apparently…we are all different
BCN (who is wonderful) said whoa… u look disgustingly healthy and your bloods are like a young man’s (hmmmmmm ok , tad worrying but i love spinach). she also said i thought you had lost your hair and i whipped the wig off and she went ok…
BCN is confident doing IV and does it well - i haven’t had her each time tho u do if u are not feeling good so that means i am ok. I have had 2 others - one was competent but it hurt - she just doesn’t have the knack and i just thought she wanted it over with. The other was much better and about 12! if they are good they ask - and if it hurst we should say
i love these spring days - am in warwickshire and some of it is pretty.
i have bought me a chemo pres - i am SUCH a brave girl i deserved the gold victorian bangle with diamonds.
Do take care
smiling here
Jxxx
J – you sure do deserve a gold bangle! More than that really. It is deceiving how we may look vs. what we feel like. There are a jumble of emotions inside - mixed and blended with our previous experiences (my parents for instance) and just plain old common fears.
Didn’t mean to be showy about a bracelet – it is only a bangle. But it was a gift from my husband early on in our marriage so I sorta never take it off. Oh well.
Next time will speak up about the IV. Being silent was stupid but once the nurse got me all set up, she was gone!!! Oh well, live an learn.
I am having fun with the wig too. Went out last night to our Wednesday night group at church and they told me I was giving chemo a bad reputation. And I told them you wouldn’t say that if I took off my wig!!! Peach fuzz head! I am noticing that I am getting more and more paranoid about germs, though. I don’t go out without my GermX anymore. But hey, I go out!!!
Have a lovely day and stay well J.
Emily
xxx
Hello Emily, I just wanted to say I had an implantable port, called a BardPort, put in last week prior to my first chemo session tomorrow. I had conscious sedation through IV in my hand, and local anaesthetic, and was completely unaware of what they were doing. Two small incisions were made, one next to my bra strap and one slightly lower, where the port sits under the skin, no stitches but a spray-on clear adhesive sealed them. I had some bruising, now just a faint yellow pool below the site. The port is visible and palpable as a bump under the skin, about 2 cms diameter, and is tender but not painful. The seat belt catches it in the car and I need something to pad underneath, other than that I’m very pleased, and relieved they won’t have to struggle to find one of my very shy veins! Good luck. Lyn xx
Thanks, Lyn. I hopw your first round of chemo goes smoothly. Be prepared. I have only had 2 – but the first was much worse than the second. It gets better!!! I don’t know what #3 will bring, but now I am seriously thinking about a port.
Emily
xxx
Hey Emily - i think the husband bangle is lovely and gifts like those are precious because of who gave them!
I forgot to say the hosp gave me hydrocortisone cream to use on the vein if it got sore. The first few times the vein ached a little the first day but I also get a bit of a headache anyway on the day of treatment so I take paracetemaol or ibruprofen and that sorts all of it.
I think it’s wrong that they plugged you in and left you!
I always carry the alcohol hand cleaner too and have used it on cups and glasses in cafes and pubs. Better safe than sorry!
Jennifer xx
Jennifer - thanks for the support. I never thought of the cream, but I am calling my BC nurse this morning and asking bout a few things. The nail beds that are getting blackish, watering eyes and the vein thing. I am really going to be angry, prob at myself, if I wind up with popping veins in my hand because of this! OH doesn’t notice it as much as I do, but then again he is tolerant of my peach fuzz head and color too so, probably not the person to ask.
Palomino-- thanks for the info re the port. I will ask about that today. I am hoping that your treatment goes smoothly.
Mary - hey thanks for the pep talk. I am finding that as the week winds down, I am getting sleepier and more tired. Perhaps I did too much. Put my head down yesterday and fell right to sleep!!!
Hope you are all feeling good and staying strong.
Emily
xxx
hey blackish nails i do too, i do runny/itchy eyes, runny nose… a wee grot this time - me lucky… none of it like bad veins which hurt… i am doing sympathy
feel sleepy now 2 days on after treatment and a trip out this pm which was fun.
laughing - such strange dreams last night re plumbing in house which were so real !!! likely to be steroid induced and have another day of those… hope the next dreams are more interesting than plumbing.
TC J xxx
Jen -
Well, the BC nurse said that the blackish nail moons are from the AC; and that it is rare that it comes with AC, usually it happens with TXT. As long as it isn’t something awful, I really don’t care. I will just keep an eye on it. BC nurse also said to keep a watch on the veins; sometimes they get hard but to check that they do not get red. If that happens to go straight in. I laughed when she gave me a response to my eyes watering – well, she said ever so politely, there is more pollen outside. Allergies. Really dumb. I never thought of that – always blame things on chemo.
So feel better that I am not too far out of the norm.
Talked to my old friend again tonight – we live far apart but in the same country at least and she wants to come see me. I used to walk with her to high school - we’ve been friends on and off since we were 16! Large spaced in between as our lives took different turns, but always there if we needed each other. That should be fun.
Anyway, it’s late here but couldn’t sleep and thought of you all.
Take it easy, tomorrow is Saturday. Freedom!!
Emily
xxx
Hi all, just a quick note to say first Epi yesterday was in the BardPort (portacath) which was inserted last week, and it was absolutely brilliant. Saline drip and chemo both went into it. I asked for Emla cream as it’s a bit tender still, nurse said it would numb the skin but I’d still feel pushing as she accessed the port. I felt her touching it, nothing more than that, and the needle insertion, the chemo injection and the drip, flushing the port afterwards, and needle removal, all happened without me feeling a thing. I can’t recommend the port highly enough and am tremendously pleased to have avoided the risk of a fight with my veins. Yes, there is a risk it could get infected; yes, there will be a small scar left on my chest when it is eventually removed. I think the benefits far outweigh any disadvantages, but do ask for all possible info from your onc so you can make an informed choice - I wasn’t given a choice, but am glad they decided for me! Lyn
Lyn-
Yes, I would rather they have just put it in and not given me a choice. But, I think it is the better of the two evils as you say. Sounds much more convenient and less painful (which is more important). The scar doesn’t bother me much, there will be scars galore so what’s the big deal. I would rather a discreet scar on my collarbone than popping veins in my hands. Vanity vanity–tis so true.
Hope you are having a great Saturday. Spent the morning getting taxes done (US) and then going shopping. Bought some really nice cushions for our patio chairs. Big goal of the weekend is for me to clean off the glass patio table, set up the chairs with new cushions and get it ready for Monday. After I do my 1.5 hours of work in the morning, I will be outside sitting in the sun with some tea just taking it all in. Ahhhhh did ou read the pst about champagne being good for chemo? Wow, that is nice!!!
Emily
xxx
Hi Emily, it sounds as though you have warmer weather than we do here in eastern England! Sunny today, but too breezy to sit outside - even the dog said half an hour was a long enough walk! Whereabouts are you? Hope the spring weather lasts over the weekend for you, and it stays dry for the runners in our London Marathon tomorrow!
Lyn xx
Really pleased that the port’s working for you Lyn - must be a real relief. i was worried because my sister’s veins went pooh but i have been ok.
Looking at the (never-ending) list of side effects for epirubin my black nails happen to about 10% of people. Some of them are fading and others are going dark. Still no lifting nails or pus which other people have had which sounds gruesome! Sometimes reading threads on here can be dangerous to one’s peace of mind!!!
You are sounding good Emily - excellent.
TC Jen xxx
Jen I’m worried now, I thought black nails happened on Tax, not Epi…? Will have to borrow my daughter’s dark nail polish and go all gothic (or is it EMO - actually I think I’ve a good excuse to be EMOtional!)
hey don’t worry lyn, it’s time we got up todate on young people stufff!!! imagine the hair styles we could choose.
Actually - be interesting to find out if having chemo through ports reults in fewer side effects…
yes just checked it si mostly peopel on tax who get the nail probs
Well, the best made plans…so totally fall through. After all that activity on Saturday, woke up feeling sick, weak and flu-y on Sunday. I totally overdid it. Then it rained. But that would not have mattered; spent the day sleeping on and off. Watched movies all day. OH was wonderful and washed all the clothes. So, no patio set up today. My son is coming up this week so will ask him to help me do it all more toward the end of the week.
Lyn - I am in the Northeast US, Pennsylvania. Temp is pretty crazy here, was 30 last night, will be 70 by the end of the week. Have always loved fresh air though so I sorta jump the gun at getting outside. Now that I am home, guess want to take advantage of it too.
About the nails. going Goth…interesting. Like being able to monitor how they are doing, but I do have some really pretty new colors.
I am really worried bout gaining weight. Have gained 6 lbs so far and at this rate, what will happen by the time I and done with chemo? Have any of you talked to a nutritionist about how we can diet in a healthy way?? Or does that equal WeightWatchers… I don’t know what to do but don’t want to spend another year trying to take off the weight either. OK, rambling now. So will sign off.
Emily
xxx