Thanks for making me laugh Implausible. I am actually a teeny bit miffed that dose #5 is delayed.
I actually told H1 yesterday “ you go in feeling fine and then they tell you you aren’t so I might as well behave like I am not ‘ 🥴
I am watching ‘A.D Kingdom and Empire ‘ my favourite character in there is Claudia ( Pilates wife) . Then I got annoyed with episode 7 as the Emperor Tiberius never visited Jerusalem ( don’t mind some artistic license but I get annoyed with the Yanks
messing with history!!!!).
PS didn’t walk much yesterday only 3000 or so steps ( and that was around the hospital) then I binged on Netflix.
She's human, guys!!!!
That is so reassuring
Morning all. I'm just packing my chemo bag ready to head off to the hospital in an hour. I don't have anywhere near as much to pack this week as I'm not cold capping any more. Although I'm still taking the conditioner as the lady in the next bed always forgets hers and I have to bail her out
Sandra I hope V is ok? My card says I don't have to call until under 35 degrees so i think i would have added an extra layer or two and ignored that reading and tried to get back to sleep, unless other signs of illness or infection....
Nettie I love your post. Glad you had a lovely time at your caravan and you have ticked off another chemo sesh. We are getting there aren't we! Nice feeling.
Sonia I hope that headache clears, and Edinbird I hope you managed some sleep. Tricky with the combo of steroids and lots on your mind
Love to the lot of you
Lovely post Implausible
(ducks, walking, positive feedback on art) good luck with dose #5 today.
Sandraindurham, is Veronica ok?
Thanks for your news Nettienoo,
I have never stayed in a caravan, only a tent and slept on the ground ( weekend) . I really appreciated my bed afterwards.
Sonia28 hope the headache has gone.
Edinbird hope you slept.
Trixielady how are you ?
Ocean21 are you gardening?
Lovely day today, plan to make the most of it.
PS didn’t walk much yesterday only 3000 or so steps ( and that was around the hospital) then I binged on Netflix.
Hi lovelies, I’m back with you all.
We had a lovely weekend in the caravan. The delay in chemo meant I had a lot more energy than usual so there was plenty of doggie walks and getting the caravan pristine again after not being used for a while. Weather turned out beautiful. I’m so happy we decided to go as I actually felt normal for a couple of days and tried to forget about all things bc for a bit (apart from temp check twice a day of course (Very therapeutic).
Back down to Earth yesterday morning as Onco appt first thing, followed by Chemo 4 (FEC continuing no T). They were busier than I’ve ever seen (probably due to catching up from being closed for Bank Holiday). My appt was 11 and didn’t get home until nearly 4. Good to have it done and dusted though. Steroids kicking in and have a headache but not too bad so far.
I can see there has been all sorts going on with my girlies over the last few days. Treatments happening, not happening, holidays, walking (loads), people feeling crappy, miserable, tearful. I wish I could gather you all together for a massive group cuddle my darlings. We will get there eventually won’t we?
The little hedgehog photo and Sarah’s artwork and duck family really made me smile. You are all such strong, intelligent, talented and very funny ladies. Everyone single one of you brings something different to the forum, your individual personalities shine through and having dipped in some other forums I think we are unique... well we rule for a start!💪🏻 😂. I can honestly say I haven’t laughed so much before I joined the forum and there have been times when I have been really belly laughing and desperately trying to regain bladder control over your comments. I think that’s amazing bearing in mind our situations. I really couldn’t love you all any more than I do. 😍😍😍.
Keep the laughter, rants, worries, general chit chat, tears, gossip, gas, poop, sexual encounter banter going girls, (it gives me great hope that at least one of us is still managing a bit of rumpy pumpy!!!! 😉🤪) and whatever is happening don’t forget for one minute how loved and cared about you all are. Xxxxx
Oh Sandra what were you doing up at 2.30 for temperature? Suggests to me other issues on top which probably indicated if you needed hospital or not... I was told if there was a temperature issue wait an hour and try again to see if you could repeat it. Many people seem to be able to bring the temperature up through warm drinks blankets hot water bottle a hat... I’ve frequently been under 36 in the mornings and after a few minutes it’s gone up. On some occasions though I’ve got up and moving or done what I suggested and an hour later no issues. I hope it sorted itself out.
Ive been awake on and off with steroid sweats combined with overactive mind... hardly heard from bestie yesterday despite my chemo issues (but he’s had tonnes to process himself too), all sorts of work questions I need answers to as our new job applications are all kicking off, and realising I’ve just hit 10 stone again 😣 wanted to be half a stone less so initially was delighted when I went up after a couple of treatments but I’ve now put just shy of a stone on in two months! All very well needing to exercise more when your legs are gradually waning and it makes your temperature feel like it’s blasting out the top of your head! Probably should do something later once the steroids kick in again.
Doubt I’ll sleep much any more now but good luck Sarah and anyone else who is having chemo related fun today xx
Sandra, Your post was 3 hrs ago so you will have probably made a call by now but my temp often falls to 35.7/35.8 in the night. I normally put socks,dressing gown and woolly bobble hat on and climb back under the covers and keep all that on until temp normal again normally after about 20 mins. Then I keep checking to make sure it stays up. I hope Veronica is ok love. Xx
Daisydi, I’ve been offered the aspirin trial too. That one I’m quite happy to do,
implausible, fab news about your comic, if it’s anything like your postcard I think the comments you got are truthful.
I’ll catch up properly tomorrow as got a bit of a headache, and can’t concentrate very well.
Not heard of that one Sonia. I have been asked to go on Aspirin trial but havent had the chance to read up on it yet. Will try to have a look at posnoc
Gosh you've all been chatty today
Edinbird huge congrats on finally getting number 5 under your belt after a shaky start!!! Enjoy the next few half decent days before the wobbly legs kick in
Rosina I'm sorry that yours has been delayed but you totally have the right attitude to it, make the most of your bonus week of feeling nice and healthy x
You would have been proud of me this morning, R .... I had a lovely walk along the canal for a solid 3 hours. I reckon that must have been a good 15k steps. But I forgot my Fitbit as it was charging at home! So I can't be sure. And I've done another 4k since.
Seaside. I was super proud of our boys vs Canada! I know the scoreline doesn't favour them but they were up against a full time NHL standard team, and they never gave up and had some good scoring chances. Umfortunately their goalie was even better than Bowns!
It was good to see Tyler Bertuzzi on the ice for Canada. He is my favourite of all the NHL young uns. Saw him play last year in LA and was due to see him again this March on my trip that never happened His uncle Todd Bertuzzi was one of my favourite Canucks back in the day.
Hope the bike ride was fun!
I have put on a stone and a half since start of chemo :/ so I sympathise on the weight gain front! I'm getting exercise but I am also eating ALL THE TIME.
Sonia good to hear from you. How did the onco chat go? (Ah I've just seen your update. Sorry you didn't get as many answers as you wanted:/ I've never been offered any trials....)
DiKat your hair looks fab! As for surgery, the others have covered off most of it. As for me I had a double overnight with my surgery as I had my OP very late (gone 7pm) on the first night.
I had a lumpectomy and sentinel node removal (not full clearance). Drain was taken out second evening so luckily I didn't have to take it home with me. Procedure went smoothly and recovery was swift and touch wood haven't had any arm problems, other than my boob and armpit scars feeling quite uncomfortable in my worst chemo weeks....
Marlyn your "sprinkler" story made me guffaw out loud!!! You don't half have a way with words
As for me, I had bloods this morning (which left me with some nice junkie bruises :/)
No call so that means I am go go go for #5 tomorrow!
I'm currently buzzing with my system full of steroids. Got to admit I love the roids! They give me so much energy!!!
I'm also in a really happy mood as I FINALLY finished that comic. I've been working on it for 14 months! It is such an amazing feeling to complete it. And I have had some wonderful feedback like this from an American comic artist I really admire:
I think he is laying it on a bit thick but I'll take it
So all in all I'm considerably less glum than I was over the past few days. Almost looking forward to chemo tomorrow (like Edinbird ) just because then I'll only have one more left to go!
Love to all
Dika, sadly I was unlucky and lost my brows and lashes on fec.....got a LGFG day towards end of rads....really need it! Xxx
spoke to oncologist today, well one of his team, have any of you chosen to go on the
posnoc trial for radiotherapy?? I decide against the chemo trial, but am thinking I may do this one. Didn’t get a lot of answers, I got a lots of maybes and possible on time schedules. Bloods tomorrow, fingers crossed
Must have been difficult having the second surgery, glad you found it easier than the first. I can understand why you made the decision to discontinue chemo....hope you’re beginning to feel more like the old you and your hair is beginning to come through xx
No, wasn’t completely bald. Started coming back at the very beginning of T which was end of Feb so guess my growth now is comparable to what yours would be 11/12 wks post chemo. My lashes and brows are still falling out now but that’s from the T so hopefully you won’t have that problem xx
Edinbird, that was a long day!!! On the weight front iv managed to gained just over half a stone....and still gaining! Eek......xx
Well that was a long day but all done now. Home for healthy dinner (quiche and beans) and then unhealthy pudding (cheesecake). May as well before I can’t eat anything at all! Put on another two kilos though... eek
I had a full clearance last December three weeks after a mastectomy with reconstruction. So as you can imagine I was not looking forward to surgery again. However it was much less of an operation than my first, the drain was fine and my scar is hardly visible.i could have gone into a trial where I had a 50% chance of not having surgery just chemo and hormone therapy. But decided against it and opted for surgery when I was told my Sentinal node was positive. I had one more node involved. Now I am really glad I made that decision as I had to stop chemo after the first one.
So I think you will be surprised at how quickly you will recover and I needed minimal pain relief. Good luck, take care.
Susie, I have a very faint white peach fuzz on top but completely smooth back and sides.....I'm getting obsessed with it.....now that I've stopped obsessing over the thermometer ...me bald head has taken over! Xxx
Hi diktat and Marlyn
Just started to read posts and saw yours. I'm 4 weeks and 3 days post 4 rounds of FEC and no sign of regrowth in bald areas and still shedding hair🙁 and eyebrows and eye lashes.
Daisydi, I was the same with my drain, I had Mastectomy so slightly different and mine got infected, but my drain and little bag were with me for about 3 weeks, and I lost count how many times I got it caught on the kitchen cupboards!!
By the way I think it helped to give the drain an identity. Mine was called Dolly and when she caught on every flipping kitchen handle and drawer it was easier to shout her name ....
Red dot shampoo??? Will google that....were you completely bald 3 week post chemotherapy? I can't imagine having as much hair as you in 2 weeks time!
Ha ha, I get my hubby to photograph mine once a week so I can compare.
All I’ve been doing is rubbing a bit of my Liz Earle cleanse & polish over when I do my face. Then just wipe it off with a hot cloth. Not used shampoo since before chemo! As it thickens up, gonna try some of that lush red dot shampoo that Shi recommended xx
my chemo nurse advised me to rub almond oil on me head and take fish oils...so I look like a greased chip pan! Do you use anything? Xx
Dikat, that looks fab! I'm 3 weeks and 4 days post fec ( didn't have T) I suppose I'm expecting a miracle, to wake up with a good coverage, I'm driving hubby nuts...keep asking him if he can see any growth....bless him...he's scared of saying the wrong thing! Xxx
Thanks for that daisydi
It’s really useful to get different experiences and the tip about trying the exercises before is a great one thanks 💕
Bloods are much better so we are on... gotta wait for the pharmacy now! Oh well not like I had much planned for today...
edinbird, sorry to hear about your liver function, I was always gobsmacked mine was normal as I was yellow throughout chemotherapy, bless you...sat there with your cannula in ready.....xxx
rosina, sorry for your delay but your right, enjoy your extra week....bliss!! Xx
seaside, good luck with bloods tomorrow xxx
hope everyone is having as good a day as possible? I'm now 3 weeks and 4 days post cycle 4 and feel more human now than I've felt since February. Still getting breathless though....stairs and hills are still an enemy.... gearing up for rads and herceptin this Thursday but trying to make the most of the next few days...
ok....warning...tmi alert....I had a "wee" shock in hospital toilet last Friday.....when I have a wee in public loos i " hover" ( you don't know who's sat there before you) this is the first time I've " hovered " and I got a shock...it was like a garden sprinkler!!!??? Then I realised ...the short and curlies make the aim better...and as there's no short and curlies......note to self....always have a wee before leaving home! I just had to share this with you all and hope to goodness I'm not the only one to discover this???
I love you all.....hair or no hair I bloody love you all....every single one of you....xxxx
Dikat I had full node clearance during my third op. They removed 24 nodes of which 4 were positive. I had a drain in for 6 days as it was draining quite a lot. The district nurse comes in and checks in daily. The only problem I really had was that my drain kept getting caught on everything especially in the kitchen. It wasnt that painful. I even took my dogs out with the drain in situ but when I slipped over it was a bit stressful! Its a funny feeling under the arm as its numb but feels a bit like nettle rash. I think mine wasnt too bad as it was my third surgery in January and I had been doing the exercises since my first op in October. Doing the exercises is the absolute key and if you start before the op you know what it feels like. A friend of mine just had a sentinel node biopsy and I had more feeling in my arm than she did and they only removed 2 of hers. They have to cut and move a big nerve around. Good luck x
Rosina so sorry you have been delayed. Not what we want but I am half expecting it too as I was neutropenic this time. x
Thank you for your comments ladies, really appreciate the info. I’m trying to look at it from a positive slant now as hopefully it will just mean the one op. I have cording in one of my veins from the chemo so at least I know what that feels like. Will make sure I do the exercises religiously. Love the info you get from these forums. Much more informative from those that have the experience. Thanks again. Have a lovely day 💕💐
Oh Rosina, what a barrying pain. At least you're looking on the bright side. I'm having my blood test tomorrow and am fully expecting that phonecall in the evening.
I had a lumpectomy with sentinel lymph node biopsy and then 4 weeks later a full axillary clearance due to one node being positive.
Rosina has covered it all really. What I would say is, it may be better to have the procedure in one go as mine hadn't fully recovered from the first op, so I suffered a bit more than expected with the second op. My drain was removed the same day though as it wasn't really doing anything. I also developed cording but it cleared with daily exercises and massaging the area.
I hope it all goes well for you whatever you decide to do.
Blood results came in for me today 0.9 for the neutrophils so another week’s delay. No dose #5 this Thursday .
Oh well, I will enjoy the break 🙃 mum arrives tomorrow so I can have some ‘drug free time ‘ with her.
Dikat I’m surgery after chemo so don’t know... hoping they only take a few with me but will have to be guided. Is in 2 that we know of so I hope they just take the lowest group. But I’m T4b as my breast is swollen due to lymph blockage so I am worried they’ll want to do more.
When I got to the ward I find that I have increased liver function and need another blood test to check it’s coming down... nothing I could have done to improve it so it’s just something that happens with T. It gets processed in the liver. My lovely scarred liver that I drank on at the weekend!! Not tonnes but still. So an hour to wait with a cannula in until I know if I’m getting it.
I had a lumpectomy and sentinel node biopsy in November 2018.
This is an ‘easy’ op. as there is no worry regarding cording or lymphodema.
Because the lymph node biopsy indicated node involvement I had to have a second full axilla clearance in December. Full clearance means possible ‘cording’ ( a painful sensation that feels like a tight cord running from the armpit to the back of the hand) afterwards and risk of lymphodema.
In some hospitals ( due to technology) they are able to assess lymph node involvement from the sentinel node biopsy on the spot whilst you are under anaesthetic (rather than having to send to a pathology lab, get results and then decide if a second op. Is needed ).
I had a drain, which came out after 3 days.
I also did get cording.
I was diligent with the arm exercises given to me and the cording resolved itself without further physiotherapy.
I think it took about 6 weeks.
Lymphodema can develop at any time after surgery to remove lymph nodes in the armpit ( radiotherapy to the nodes can trigger this too).
I have not had any symptoms and I am hoping that daily exercise ( 30 minutes walking) plus keeping my weight steady and arm exercises will keep it at bay. Swimming is also excellent and I hope to swim again once treatment is over.
Hope this helps answer some of your questions.
Morning lovely ladies
Was just wondering if any of you who had surgery first and been through full node clearance can help me out with what to expect. My surgery is scheduled for this Thursday and have signed consent for lumpectomy and for 4 nodes to be removed. Got a call this morning to say I need to go and see surgeon on Wednesday as the Oncologist has told her he thinks she should do a full clearance due to how I initially presented and with being HER2 +. My day case has now changed to overnight and will need a drain apparently. Talk about rollercoaster xx
Morning all, yes its a beautiful day again. Good luck to all having stuff done today. I imagine the side effects from the weekly dose just take longer to kick in as it is a lower dose every time. Wish I could have it though. Have a nice bike ride Seaside x
Good morning my beauties,
What a lovely sunny day! I'm planning on riding my bike and going for a walk today because I've seriously piled on the pounds during this cycle. One negative of having no nausea is that I have been very hungy and clearly overeating! Oops. Not only am I getting fat, I have lost my eyelashes, most of my brows and my eyes are constantly streaming. Daisy, I probably would have sore fingertips to add into the mix but I am a bit obsessive with handcream so I've managed to avoid that one.
Sarah, you're right. Docetaxel and Taxol are differrent drugs. Trixielady, the reason Docetaxel is also known as T is because the brand name is Taxotere. Whatever they're called, they're all horrid and I can't wait until this part of the treatment is finished.
Thanks for all the lovely photos Ocean, Sarah and Rosina. Makes me want to go out there and enjoy the plants and wildlife.
MBJ, I always wish someone would surprise me with a garden makeover too. I know what I want it to look like but I can't make it happen.
Sarah, I felt so sorry for team GB last night. They put up a brave fight but Canada are just on another level. It did remind me of MKL last season as Killeen (our goalie) kept us in many games by being the proverbial brickwall but we were often outclassed, especially when we played against Belfast.
Good luck Edinbird for treatment today. Nettie, are you having yours too? Good luck and rest lots.
Hope you can all enjoy a bit of sunshine today.
Ta for the clarification Trixielady, you are far better informed than my quick Google search
Edinbird, good luck today!
I am currently guzzling water like someone who has just spent 10 days walking in the desert, in the hopes that it will help them get blood out of me in 45 minutes up at the hospital, to be tested for tomorrow.
I really wish my port hadn't stopped working
Ocean21 & Implausible
Taxol is Paclitaxel and different from Docetaxel which is T god nows why!! the side effects are very similar for both unfortunately as usual it depends on the individual and their BC and apparently Taxol also treats various other cancers, taxol is also given 3 weekly or in other cycles mine is weekly and at the moment my side effects or joints aches an muscle pains, eye brows and lashes disappearing slowly, finger nails don't look good either now, still suffering from breathlessness xx
Edinbird good luck for today xx
Slept about 11-4.30 with a couple of wakes. That’s not bad for steroids at 5pm... won’t be repeating it though! So up to eat and steroid up and start drinking. Hope I can work this out so I’m not desperate on the bus!
Due in at 11 so hopefully quicker than last time I don’t want to break the 4 goes for the cannula record...
The weather is lovely but shouldn’t be too warm for when I go in thankfully. Will let you all know when I’m home xx
Ah, Ocean21, you would be my perfect neighbour!
I love plants with passion. When I was living in a flat I had around 200 pots of plants, most of them planted from seed, bananas included!
Of course, moving as much as we did, I gave almost all away, but I really need to find roots somewhere and start a garden.
I think I did all, composting, greenhouse, seedlings, cuts, Gardener's World, catalogues, you name it.
When I was living in Norwich I was a Master Composter volunteer, I would go to gardens advising on how to do compost, replying emails and loving all that is related to Nature, building shelters for bees, butterflies and ladybugs, using Neem oil to fend off pests.... haaaaaaaaaaa... it is bliss
By the way, ladies, I need your opinions, advice, indications.... Edinburgh or Cambridge to move?
Ocean , I don't think that Taxol and Docetaxel (the latter being our "T", despite starting with D!) are quite the same thing.
The lady I always see at my chemo sessions is, like you, having weekly doses of Taxol, and like you is coping great. She gets chemo'd every Tuesday and has hardly any side effects, and has been going away every weekend on walking trips around the country.
Whereas my Docetaxel dose is every 3 weeks, and hits me like a horse tranquiliser!!!
As far as I can tell from a quick Google they are related, but different, drugs....
Beautiful pics Ocean, especially love the Iris. I'm using Evonail as well but my nails are still sore. Oh well hey ho!
Hey lovely ones,
Hope that some parts of your day have been good
I spent the afternoon gardening. After years of painstakingly digging up weeds because I thought using a hoe would be pointless because it wouldn’t do a proper job since my lumpectomy I’ve had to get real, especially since the river end of the garden is choc full of stones.So, these last couple of weeks I’ve been discovering the delights of hoeing Marvellous , don’t know why it took me so long.
MBJ , you’ve got some fab looking plants. If it’s going to be a while before the landscaping get done why not treat yourself to some lovely slate coloured pots to go with the style of your house. I always knew that we’d be getting a big garden when we bought our home together so for about 4 years I did some serious container gardening and ramped it up when we found this house and I saw how expensive plants are to buy over here. The removal men didn’t thank me for the 500+ pots they had to find a way of loading and bring over 🙃🙃
The little cafe in the village park opened up this weekend and the village seemed busy . From my garden I could her the kids running about and having fun. May is the start of pétanque season so as there’s an area to play in the park I could hear the clink and clash of balls being played. We joined the village club last year and it’s great fun even though they take the game really seriously over here and same members are super competitive. It was great to hear normal life a world away from bc continuing on while i gardened.
So sorry to read of your struggles with Taxol. I wasn’t looking forward to it but have been pleasantly surprised at how I’ve been on it. Although must admit that Ive had couple of ‘blah’ moments and couldn’t understand why because it’s not like me. The wonders of side effects eh?!
The nurse will be coming in the morning to take my bloods to get them to the lab. Tuesday I have my session.Hoping I don’t get the chair by the door again. They park the lunch trolley there and I honestly can’t stand the smell.
Marlyn,forget the eyebrow envy I feathered in and around what’s left of mine with a brow pencil. I don’t really do makeup apart from lipstick and maybe mascara if we’re going out. Before I took that photo I thought I’d not done a bad job on the brow front but then I saw the photo and thought they looked a mess but posted anyway.Then you looked at it and said you have eyebrow envy! Spurred me on to improve my fake eyebrow skills
I’m going to have to start wearing nail varnish. Up until now I’ve been using the Evonail recommended by the oncology nurse and before Taxol my nails were fine. Now even though I’m putting it on every day I’m still getting these dark shadows on my nail bed.. It’s just a dark crescent at the bottom of nails at the moment but on my thumbs it’s spreading upwards .I guess they’ll all go that way so I’d better get some coloured varnish on.
Anyway, onwards... and obvs more pics