Morning Valentines – I’m practically in tears at the moment about what arrived in this mornings post – a packed box of goodies from my cousin Mary in Norfolk. All sorts of treats, that I wouldn’t have thought to get myself, but know I will love; plus bath salts, seeds and little nothings. Not only is it incredibly sweet of her to do, but she has so much to deal with in her life already. She is the sole carer for her husband with Alzheimers.
Its these little moments that make this all worthwhile — well, almost!
Hugs to all, Louise
Louise what a wonderful cousin you have. Such thoughtfulness.
FEC 1 Day 10
Hardly any nausea at the moment but have had a headache since waking this morning.Have checked temp. and it’s normal. Really wish I had a some energy. I am SO bored. All those times I fantasised about how great it would be to have endless time to do absolutely nothing - turns out its just so not great. Grass is greener ect ect. I have a whole lot of craft projects but can’t even motivate some energy to pick them up. Feel guilty for being so lazy.
Sorry for moan girls.
Tup x
Caroline - thanks for the Portacath info. Was the procedure to insert it OK? How long were you at the hospital? I am pleased I am having one as they do sound far more convenient than the lines as far as bathing, showering, and flushing out are concerned.
Anyone else got one fitted? I seem to remember someone posting their experience when it was fitted, but can’t find it now.
I’ve read back through all the posts (so many!!) and it’s great to see many of you sound cheerful and upbeat today. Had to laugh at the window cleaner story because only yesterday my friend was asking why I bought some sleeping caps, and I said in case I open the curtains in the morning to find the window cleaner staring back at me!
I have been rejected by the Clinical Trial people (Aphinity - Perjeta drug trial for HER2+++ folk), and am so relieved because it has taken the decision out of my hands. Apparently I don’t satisfy their new criteria for eligibility. Phew! I wasn’t sure I could cope with Herceptin and Perjeta for 12 months.
Granny P I also got the silver medical alert bracelet with the heart, plus a purple silicone wrist band for my “bad” arm. Looks like I may have to get another warning people about the portacath.
I hope you all have a pleasant and peaceful weekend, no dramas, minimal side effects, and good luck to everyone starting the jabs.
aww Tup, you sound really fed up! I understand how you feel as I was there a couple of days ago and it’s not a good place. Hang in there your energy will start to come back and so will your enthusiasm for your crafts. Big virtual hug xx
what a lovely surprise Louise, made me smile
hope the meds are working for you Alison xx
Mandy your post about the window cleaner made me LOL, Thank you for that! I’m finding my neglected house hard to deal with too! Especially on the days when I was to fatigued to do anything but look at the dust! OH and 18 year old daughter were keen to help out a bit more at first but think the novelty wore off very soon into cycle 1. Also I think that their idea of clean and tidy is a world apart from mine! Found myself making lists of things I need to do when I had more energy to make myself feel better!
Hope you are managing SEs Caroline xx
I love Anna Banadana too Kim! I’be been wearing the beanie style hats accessorised with headbands. I’ve had loads of compliments! I found myself explaining to one lady, who had seen me wearing two different hats on different occasions, that I was wearing them due to chemo, she seemed very surprised and said I thought you just liked wearing great hats!
Shaved the last of the hair off yesterday as was getting so messy. Didn’t get much sleep last night as head very prickly! Anyone found a way to deal with this?
Sorry you’ve been delayed Chris, hope it doesn’t mess up your plans xx
hugs to all
Elaine xx
TCH x 4,cycle 2 dy.16
If you google ‘different types of chemotherapy drugs’, at the top comes info. from www.cancer.org Very informative.
LINDA, I am on TC with Herceptin. (taxotere/cyclophosphamide)
Jen x
Sandra, I had nodes affected. lump was 3cm, grade 3, stage 2b. Just been browsing the Macmillan breast cancer booklet and it has much more info in it than I thought. It’s given me hope that I might escape the dreaded radiotherapy.
Afternoon Valentines,
Sorry to hear some of you are suffering with side effects - hopefully they will pass soon. I’ve had a good week this week. Took my little boy to a soft play today with my friend, it was lovely to do something normal, although got a few stares as now wearing my new head gear.
My friend told me about her brother who decided to shave his head as he was a getting a bald spot, he says “if the grass ain’t growing, get a patio” - i thought that was hilarious, hope it tickles some of you too!
My 2nd cycle is on Tuesday and I’m desperately trying hard to KEEP CALM AND CHEMO ON!!
Hope you all have a lovely weekend, especially the mummies- Happy Mothers Day.
Love, Sarah xx
P.s a get together next year would be fab! X
Elaine - did you buy any sleep caps? These might solve your problem. I ordered some from bohemiaheadwear.co.uk/default.htm and they arrived the next day. Obviously I haven’t tried them yet but they seem to be OK. I bought a few things from there, and also the Annabandana site. I am now busy clearing out some drawers to make room for my soon-to-be-new-look and tossing out a load of hair accessories and equipment I won’t be needing for a long time to come!
Love the “if the grass ain’t growing, get a patio” quote!!
FEC1 day 9
Quick update just to clarify the toilet thing!
So, I was awake at silly time in the morning (having woken shaken and screaming from a burglar related, chemo nightmare ) and obviously logged straight on to see if any Valentines were awake. It was a dismally dull day so I got up and opened the curtains to let some light in. At that moment I heard the window cleaner and shot under the covers. Hence the post typed frantically without my glasses! so much for predicive typing!
Lovely to see some of the early names popping back to chat. Sorry to hear so many are having a low time. I was bad earlier in the week but am feeling brighter now. My nose is running all the time 'though, which someone said was a sign of the hair beginning to come out (that is out of my nose, not my head!). Mind you, head is a bit itchy too - just scratched it and counted 4 fallen hairs. The thing is 'though I’m not in the habit of counting hairfall when I scratch my head normally so that might just be normal drop rate.
Think I’ll look at some of the headware sights mentioned. I’m bored too. Had plans to do so much but somehow, even though I feel brighter energy levels are not great.
Hugs to all
xx
Linda I also have a portacath and just love it. i had it inserted on a Friday and it was used for my first dose of chemo the following Wednesday. I had it done with local anaesthetic,it didn’t hurt but could feel them pressing down and putting pressure on the area. It took about 40mins to fit then I had to stay to be monitored for 3 hours then home. Only needed to take paracetamol for mild discomfort that night. The scar is high up with me cause I have bilateral expanders in but it’s fading every day. Will be reluctant to let them take it out, would quite happily live with it forever but I doubt that’s a option. I was told that it would set off some security alarms but as yet there has been no beeps, they also give you a silicone wrist band to wear to inform about make etc.
Hope this helps
Buddy xx
Fec T
Fec 2, day 9 (think I put the wrong day in last time)
Just knocked this up today, especially for all of you.
Ode To The February Valentines
Dear Valentines, my dearest friends,
how good it is to read
of all your joys and all your pains
when you relate the smallest gains.
in this long fight that we all share
this heavy cross we have to bear.
So many of us tell each other
all our wildest dreams
of being cured and whole again
of getting rid of chemo brain
of being free from chemo fog
this hateful journey, this hard slog.
Against the foe we all joined forces
and every fight just re-enforces
our strong wills
to climb those hills
that cancer makes us climb.
This long hard trek we joined together
and face united, stormy weather.
We knew it wouldn’t be a ball,
but still we battle on,
Survivors, one and all.
I’ve sorted out some old poems of mine, some amusing, some moving, will put them on one at a time. Hope you enjoy reading them.
Between poems, window cleaners & patios, I’ve had some laughs this last day or two. The patio one particularly made me laugh as today my hair has started to come out, so I felt this was very appropriate. What day did most of you shave it off? Some of mine came out in the shower but I’ve no bald patches yet, although I know it’s soon all going to go. I don’t fancy wearing my wig but scarfs scream ‘cancer’, however I feel more comfortable with the scarfs (just not so comfortable with everyone knowing I’ve ‘c’).
As regards the acid pee, it turns out that I had a rare SE of neutrophenia, so I have to see the consultant onc rather than any onc before round 2. If any of you have such symptoms don’t let it run as I was in agony for a week before I saw a nurse.
I hope this finds everyone doing as well as can be expected.
Hi Valentines
I totally agree with what you say about having chemo, it would be my choice to have it, given I had the choice. My concern was actually ‘am I getting enough’ as I went from the original regime of FEC and one other 3 of each to TC x4 especially as mine had spread to the nipple already and a relatively small lump. Still I like to think they know what they are doing!!
Thank you to those who have posted about their experience with portocath I get mine fitted Thursday and having my first cycle on the same day . Trying not to think about it too much but I am beginning to fret now. I’m sure it’ll be OK. Do we need another medical alert bracelet for that as well? You know nothing was mentioned to me about that at all I would be completely lost without this site. Did I also read something about black nail varnish or did I dream about that?
Love the photo of your cat Louise, my mom regularly sends me pictures of my wee dog. She is looking after him while our house move goes though (living in rented accommodation at the moment) and I do miss the wee man.
Thanks for the poem Kath I’ve printed it off an put it into my diary
Sending lots of cyber hugs and love to those who are feeling down but you all really are an inspiration to me – you can do it so can I. xx
Day 17 I think !! Round 2 Fec-t
when will I learn to copy & paste or write everything down , I’ve come to post & forgot loads so I do apologise if I don’t comment on everyone personally , used to blame being blonde cant do that now but chemo brain is a ready excuse !
Loved the patio quote & Kath totally loved your poem !
I am in the no energy camp & just hoping I am well enough for Tuesday , again I’m sat wanting to do a million jobs around the house but shattered after just washing up its frustrating & OH doesn’t clean to my standard but im trying to hold my tongue on that one ! The time on the sofa has meant plenty of time deciding how I will redecorate , oh doesn’t know about that either !
Elaine my bristles at first used to rub the wrong way & made it uncomfy on a pillow , it does get easier head not as sensitive , I’ve purchased a few sleep hats from Anna bandana but my favourite by far is a rosy sleep hat from suburban turban , very comfy for bed . I’m going to try my oh shaver with the foils to see if I can smooth down the remaining few bristles
i am with you Dyane , i personally dont want to look like a cancer patient, I don’t wear my hats in public & look like a pirate in a scarf & I totally love my wig it’s so easy , I go bald around the house but feel the cold so often just wear a soft sleep hat, I do think its personal ppreference
ive just booked my daughters birthday party it’s not until June !! But she has put her request in early & wants a pamper party !! She’s going to be 7 !!! Used to be pass the parcel , jelly & ice cream & a long party dress in my day !!!
SE’s for me just tiredness & sore arm, hope everyone is ok & wish you all a lovely weekend
Karen x
Ok, glad that went down well. This one should make you laugh. Tell me if you get fed up of 'em.
Goats
Trotting through the dusk on that deserted country lane,
a sight I’d never seen before - nor never will again,
as if by magic there suddenly appeared
a host of hairy goats, unusual and weird.
The big orange leader inspected his troops,
made them form lines, sorted them in groups,
marched up and down like a sergeant at roll-call
I’d swear on my life he inspected them all.
A fat multi-coloured chap with horns that curled round.
A scrawny old bill with a beard down to the ground.
A milk laden nanny, two kids close behind
bickering and snickering (they had an axe to grind).
Elegant twins with hooves painted pink
and roses twined around their ears (at least that’s what I think).
They came in their fives and they came in their tens,
they stretched so far along the road, I couldn’t see the end.
So where were they headed, this brightly coloured throng?
Straight past me and towards the pub that I’d just staggered from.
- hopefully they will pass soon. I’ve had a good week this week. Took my little boy to a soft play today with my friend, it was lovely to do something normal, although got a few stares as now wearing my new head gear.
. Trying not to think about it too much but I am beginning to fret now. I’m sure it’ll be OK. Do we need another medical alert bracelet for that as well? You know nothing was mentioned to me about that at all I would be completely lost without this site. Did I also read something about black nail varnish or did I dream about that?
