To make you all feel better... I would have chosen two hours of cold cap and chemo over this... he nearly passed out from it and fell asleep in the car on the way home! We don’t choose our pain but we are all beautiful flowers anyway and now D has one on his neck. It’s for his mum not me tho!
Stick a cannula in my hand and pump me full of poison any day over a neck inking! 🥴
Edinbird, a tattoo sounds interesting. I hadn't thought of that. I've often fancied a small butterfly on the back of my right shoulder, but have never had the courage. Like you I'm trying not to think about the surgery, but sorting some of the practical stuff, pjs, bras, etc. At the moment I am only allowing myself to think ahead to 14th May, the day after we return from France and I have my PICC care. I'm finding it easier to cope when it's broken down into segments. And yes ultimately I'd rather have a dent rather than a lump too. You sound as though you've a busy day and as far as indigestion goes, you have my total sympathy😲. Hope you get a decent night's sleep🛌🏾. I've totally forgotten what that feels like😪.
Sonia28 well done for getting number 4 out of the way. I'm not surprised you feeling unbalanced. At least you'll really appreciate it when they sort it again for you. Like the thought of shorter cold capping time but may take longer than some of you as I will be having C with T☹.
Have a lovely evening everyone and get plenty of rest. xxxx
Thanks for all your messages . Don't know what I'd do witbout you. I finally escaped at 5.30pm with nothing to report other than I am cream crackered. I've had my dinner and a quick walk to stretch the legs. Already had my 8 steroids in preparation for tomorrow. Will have an early night and hope I get some sleep 😴
Daisy, it sounds like you've got a plan to find out about steroids. I do find it strange how things vary depending on which hospital is treating you. I hope you get it sorted. It's not nice to be worried.
Well done Sonia, that's another one down. Hope you feel OK.
Love you all loads.
Hi Sonia yes I will give them a ring tomorrow. I will have bloods done on Monday but I dont go to the unit until my chemo on Tuesday. Thanks x
i would give them a ring tomorrow and just check out what the situation is, are you due in for bloods before ?? They may give them to you then.
I have a dent Edinbird. I didnt after the first surgery but he went in 3 times in the end taking more and more away so I now have a bit of a ridge and a dent which I am not particularly happy about. If I decide to get evened up he may be able to do something about it but will think about that later. I am more concerned that I do not seem to be taking steroids the day before my first T like everyone else and now I am totally stressing!
I have the mouth wash, they prescribe it for me on the ward.
I was told you need the steriods as it stops reactions, so you have them the day before day of and day after, 4 am and 4 lunchtime.
Glad your done Sonia and Sar should be nearly finished. Just seen my oncologist. Asked him about side effects and he said the main one would be fatigue, shouldn't get nausea, maybe more hair loss. He said my radiotherapy and hormone tabs will start 3 weeks after last chemo. I dont get steroids the day before. Am I the only one? Think I will have to ring unit as I dont know what to do for Tuesday. Also went to pharmacy and he recommened difflan mouth wash for my tongue which is still very sore but I am going to try to get it on prescription so I dont pay for it. Hope everyone is ok xx
Well I am done and dusted with chemo number 4. I then went out for lunch with my friend who took me.
Feeling good so far. my oncology nurse suggested taking 2nd dose of steroids at 12, to help me sleep, as very little sleep last night. It was great not to have the cold cap on as long either.
Susie my gremlin was 5.5 cm which is why i needed the mastectomy. I'm a 34 F, so I'm a little unbalanced at the moment, it felt so much better with the reconstruction, but that will come again at the end of the year.
Is anyone else having ovaries removed?
Seaside Sar, you look fab so do your noodles.
Ocean21 the song was lovely and uplifting xx
will catch up later friend has just popped in
So much going on as usual!
Sar that food looks good but not good being stuck in all day... hope it’s moving on now.
Susie I’m only 34B! So I have the same worry. But I’d rather have a dent than a lump! But I want my scar tattooed over so it’ll need to settle well so it might not be a quick thing. Just not really even thinking about surgery until they tell me what they recommend.
Feeling tired but have been running round all morning on taxi duty and watching an excruciating tattoo get done! Bestie is delighted but totally wiped out by it. Now I’m feeling the steroids leaving my body... my appetite seems finally sated!
Maybe I’ll get a good sleep... if only my indigestion would do one 😝
Implausible thanks for the info and encouragement regarding surgery. A pert left boob sounds good to me so long as the right one doesn't travel too far south⤵️. I just don't want to end up with a dent. I know my Gremlim is only small now but my boobs aren't exactly big at 34C. Glad toheaar you're finally getting somewhere with your holiday insurance. Chemo or steroid rage😠😤 seems to have done the trick. If your ins comp is like mine once you have made a claim there should be no time limit in getting all relevant I formation to them. Good luck🤞. Love the story about Atilla, you couldn't make it up.
Ocean21 loving all your photos. Can't wait to get to Aix en Provence in a couple of weeks. Would love to see the lavender but we may be a bit too early. Not sure when it's in flower so I'll Google it later. Just take care of the robin eggs🥚🥚. Prickly hair? Usually=more hair loss for me, although I try to convince myself that it just needs a wash.
Seaside Sar you're looking good and so do those noodles. Is that a prawn I can see🦐? Yummy☺. Sorry it's going to be such a long day. The room you're in looks very light and airy though.
Rosina hope you feel a bit better. Doing all that stuff on steroids was very brave.
Trixielady glad I'm not the only one that can have a melt down whether its sudden tears or raging anger- hubby thinks it like pmt all over again😠😭☹.
As for me I'm better than I was and my BP was much lower this morning so the beta blockers have done their job. Also my latest supply of headwear and PICC line covers arrived today. They will definitely be the last. If I'm going to rock a new look then I'm going to do it in style.
Take care everyone. Love to all xxx
Hi Rosina and MBJ,
I'm getting increasingly bored but feel fine so can't complain.
Passwords and pins...nightmare trying to remember them at the best of times, never mind with chemo brain!
looking good 🤗
I have spent all morning trying to login to my teachers pension account and my association of science education account.
I so was due to attend an ASE event this afternoon but have cancelled now.
Feeling odd !
Passwords, pins, usernames every thing had to be updated.
All done now.
Maybe doing this on steroids wasn’t such a good idea, on the other hand one website had under gone a re-design so everything needed re-newing.
Thanks Daisy and everyone for your messages. It really does help to know you are all here.
Trixielady, I will have 18 cycles of herceptin. The first 3 via infusion and the remaining 15 will be injections given at home.
Hi lovely ladies,
Just popping in quickly to give you an update from the oncology suite.
Got here at 9am and was told my neutrophils were 1.3 yesterday so would need to be retested this morning. Nurse was confident they would have increased, which they did to 2.3 so all good.
Then found out my herceptin hadn't arrived yet, so several calls were made to pharmacy and they eventually arrived at 11.45am. The infusion takes 90 mins and then they have to monitor me for side effects so I'm here until 6pm. Yawn!
Good news is, I got the window seat and I had some toast made by one of the lovely volunteers. It's the small things 😊
Hope everyone's day is going well. Good luck to those having/had treatment today.
This link is to a song that’s one I’ve played many times over the years when I’ve need to look forward and keep going. Used to listen to it a lot when my ex husband was being particularly unpleasant and also in those times when I really didn’t know how I was going to feed my kids. I still listen to it in challenging times. The lyrics are appropriate for us I think..’ As long as you keep your head to the sky.. be optimistic ‘.
Rosina there are some inspirational quotes you might like in this video.
I love playing this song really loud, sometimes I even shake a tail feather or two while it’s playing . If you haven’t got the energy to move I insist you turn up the volume on this,it’ll do you good.
Love, hugs and endless positivity to all you wonderful beings.
Morning. Good luck Sonia and Seaside for today xxxx Im off to see the oncologist later on. Thanks Implausible Sarah for info on cold cap. So all being well it should only take 2 hours once fitted and running. What a relief! Nettie I would love to get off this bus for a little while but I also want to get it all out of the way xxx
Good luck all you beautiful ladies on our continuing journey for whatever is chucked out at us towards the end of the week xxx
Oh hunny Rosina the sun will definitely return won't it I feel like a little girl wanting reassurance fingers crossed and I'm giving away plenty of blood unfortunately not that other's can use xxx
Bless you sweetheart SusieB
Good on you for wearing your wig and bandana, anxiety is awful plus our journey is so difficult with its ups and downs, irritated by others and their lack of support or understanding at times of what needs doing sometimes our upset and anger comes to the front without even knowing, yesterday i just burst into tears didn't even feel them coming on
Yet another Barrying 💩 night's sleep😩 so I'll start early and rabbit on about me and what I've been up to these last couple of days. Mission accomplished on Monday and went to a local garden centre wearing one of my bandanas and fringe☺. It was fine but I think I'll only wear one on warm sunny days and of course it will have to match in with what I'm wearing. Unfortunately things went downhill Mon late afternoon and into the evening☹. Got really angry and ratty with hubby when he asked what housework needed doing Tues - he had the day off. Just look, like I do, if there's dust, then dust, if hall carpet has bits on it, it needs vacuuming. If I can work it out why can't he?.aaaaaaaaarrrrrhhhh! That's only one example. Also got worked up as although we explained to our son he would need to step up and help more, he hasn't. Wonder if I gave birth to a three toed sloth? Anyway upshot was that when I got up yesterday I was feeling really anxious and on edge, then had a nose bleed, not much, but unusual for me. When I told hubby he asked if I'd checked my BP? I checked, and oooops it read 147/93, twice. That's not me at all unless I'm at doctors etc - white coat syndrome. So popped a couple of my meds for anxiety (beta blockers) and things have improved, but I'll checked my BP later. Sorry rant over.
Right onto hairdresser visit. She was brilliant, trimmed my hair, what's left of it, and unfortunately is still falling out. She. came up with all the positives of having a couple of wigs and looking forward to hair regrowth. She very kindly trimmed my two fringes, I've got a dark and light one. She's cut them slightly differently to give two different looks. Top tip, she marked where my fringe should go in the bandana with a marker pen so it will be in the correct place each time. I'll do the same with the others. Oh I forget I wore my wig on Sunday when it was warm and it wasn't a problem☺. I've requested a Hidden Disability Lanyard through British Airways. It was really easy and may come in handy as I don't know how tired I'll be 4 weeks after chemo, maybe I'll get to sit down in boarding gate area? Also I'm concerned about getting knocked and jostled when I've got Klingon (PICC line) attached to me. I'd hate for it to get dislodged or something. Hopefully a member of staff may notice my lanyard and see if I need any he'll with anything. We'll see how it goes.
I've read all the posts but just like someone else, sorry can't remember who, I'll have to take notes. I can split screen tablet, but it's not ideal. So will respond to them later. Good luck to all of you having treatment, especially those of you changing to new drugs. I've got ages to wait until I start TC. Am I the only one that's having C with my T. The joys of being on a trial.
Be back later. Love you all❤❤❤❤❤
Implausible great news re. Your flight refunds. You will get them. I just know it.
I meditate and I shout when I have to.
I like a medic that makes me laugh- always the best medicine.
Good Luck to all who are in hospital today.
Good luck today Seaside with Herceptin - didn't realise it takes 6 hours!!! And Sonia with first T. Have I missed anyone else for today?
I'm happy to report that although I woke again in the night with the sweats briefly, my mad brain wasnt telling me that everyone hates me this time:) hopefully that was a one off!
And so far on T I feel physically fine, no joint pains yet which I wasn't looking forward to as my knees are a bit rubbish at the best of times!
Ocean love the robin eggs, hope they both make it!
A little bit of further info on yesterday's port troubles. Apparently it is not unusual for some platelets to lodge in the line that runs under the skin from the port to the clavicle vein. Usually they can dislodge this with a few saline flushes and drips (which they tried so many of yesterday, I must be the best hydrated I have ever been!), but that didn't work.
The good news was that, like I said yesterday, instead of a complete blockage mine seems to have, for the moment at least, caused a valve so the chemo and other stuff can get into me just fine, but nothing can come the other way so they couldn't use it to get bloods out.
After the chemo went in yesterday they administered a syringe of what the x ray doc (who was lovely and made me laugh throughout my visit to him yesterday) referred to as "Mr Muscle industrial drain unblocker" to hopefully remove the platelet blockage altogether, as they are worried that otherwise it will build up more and next time it will be a 2 way problem.
Nurse tried to draw bloods again straight after, still no luck, but she said that it might just need a little longer to work and sent me home with fingers crossed that by my next cycle it will have resolved itself. I sure hope so!
I have also woken to some good news. Remember my holiday flights insurance saga?
Well, as I said before, all i need for the insurance is written proof from either Expedia (the online travel agent i used to book the 10 flights) or the 4 airlines involved, that all flights were cancelled/unused.
I've been trying to get these "no show letters" for about 10 weeks now with no luck. Have written letters and emails and made countless phone calls. But the airlines and Expedia just kept fobbing me off and throwing me back at the other party in an endless game of blame tennis....
Now i have TRIED getting stroppy with them before as I know that the squeaky wheel gets the oil in this world! But maybe I wasn't very convincing as it doesn't come naturally to me.
But this time Expedia made the mistake of calling me (after I had emailed them demanding an update) on a 'roid rage day this Monday.... :cathappy:
I REALLY laid into the poor young Indian guy on the phone. Feel a tiny bit guilty now :catvery-happy:
The result was he promised to get me all the paperwork sorted "within 48 hours". I yelled "I'll believe it when I see it!!!!" and hung up on him! I've never done anything like that before!!!
This morning....less than 48 hours later.... it looks like i have separate paperwork for each flight sat in my inbox :cathappy:
It does annoy me that they didn't do it sooner!!!! Kept saying they couldn't, only the airlines (which refused to do it) could. That was clearly a lie!!!
But they are here now. I need to stockpile steroids for next time i need to make a stroppy call!!!
Now i need to call my insurance company later today and hope my claim hasn't expired or something because it has taken so long! That would be sod's law, huh??
Happy Wednesday everybody, love to all xxx
Morning Rosina, i dream a lot when i actually sleep, my last was i found a black handbag and purse full of money and wanted to give it back but was told not to typing with one hand as i was awoken this morning with a nose bleed oh why oh why what a beautiful morning i can hear the birds singing, when at school i used to love the song Morning has broken xxx
Thanks for the pics Ocean21.
I have woken up after having a dream with swallows in it
Funnily enough I was in some city on a roof top ( high rise , other people where with me not sure who) but I was focused on the swallows ( hundreds of them) that were circling above and had made hundreds of nests on the sky scraper that was towering above me and on my left.
It was exhilarating watching them with their scissors tails streaming behind them.
Now to go back to sleep. Dawn chorus in full swing outside 🤗
Good Luck Seasidesar with the Herceptin today.
Ooooh just remembered you have neutrophils of 9.6 Sarah. Wowzers! That must have been some chocolate gorge! I hope the fact that I almost inhaled my two Easter eggs over the weekend in pure greed will now see me fit for the week! 😘😘😂😂 xxx
Daisydi, I’m with you on the anxiety front at the moment. There are so many of our gang facing new challenges this week that I just want to ring the bell and get every single one of you off the bus for a bit so we can all go and sit in a rooftop bar somewhere beautiful like Italy and drink cocktails (lots) and not have to cope with barrying treatment.
Ps I know everyone of you will get through this week because we are all bloody awesome but if I’ve won last night’s euromillions we are all taking a week off and heading on a private jet to Italy ok? 🍸
Pps Ocean, 2 eggs? 🙏🏻 🙏🏻. Stay safe little eggs. Xxx
Just checking, anyone on Zoladex?
Good show everyone here, tackling chemo and issues, you brave girls!
Good luck, my herceptin was given by an injections to my thigh stung a bit but only for a few seconds,Nurse said reactions are rare but there are a few side effects so very similar to chemo, still one step closer, how many are you scheduled for I'm 12 along with taxol but have heard some people do 6 and some continue as long as its working xx
Losing track if who on what treatment, going to have to start keeping a notepad next to me.
MBJ, power to you for going to the service. I think I would made my excuses given his illness, would have been too raw for me big wuss I am so I truly do salute you my love.
Good luck and positive thoughts and hugs to all who’ve already had or are going to have treatment this week. We’ve come so far and done so well all things considered.
Rosina eating fruit straight off the tree is one of my favourite things and one of the joys of our garden. Last year I couldn’t give away enough figs or persimmons,we had so many I didn’t know what to do with them. So far things are looking great crop wise. Two of the cherry tress that hardly had anything on them last year look like we’re set for s bumper harvest this year.
Tim has already bought a cherry pipper, obviously in a man’s world that’s an urgent purchase! He announced today that he should really get another one because according to the blurb in the packaging you can destone cherries one handed. Call me far too sensible or maybe it’s just the woman in me but one handed cherry pipping has to have been thought up by a man!
Anyway, at some point in the summer Tim will no doubt be sitting in front of huge bowls of cherries ,a cherry pipper in each hand trying to scoop individual cherries in at the right angle to be pipped. I shall obviously be taking photos for posterity 😂
Some pics for you. Nettie you’ll be pleased to know that there are now two eggs in the robins nest. There’s a cuckoo somewhere in the neighbourhood so we’re really going to have to be vigilant. Honestly, all the trees we have around here and they ignored in favour of a bag manure !
Oh everyone is joining the T party! See what I did there?! 😏
I really hope everyone is well with it I’m so pleased I don’t feel any different to the FEC but some of us will want to feel totally different. Wonder how much I’ll slump by this time tomorrow?
Have a busy day tomorrow taking bestie to appointments but I wouldn’t change it for anything. I can sleep tomorrow evening (after jags and meds). Sorry injections... slipped into Scots there!
All these changes and additional stuff is really making me scared for everyone else and me. Hope all goes well this week xx
I’ve also got the go ahead for T tomorrow, I rang to check at 6 tonight. They said all bloods were looking good so the weeks extra did well.
Implausible, glad it went ahead today.
Good luck Rosina for tomorrow and seaside Sar for your herceptain and Marilyn and seaside Sad for Thursday, hope I haven’t missed anyone xx
Seaside, thinking of you tomorrow, will you be having herceptin via cannula or iv? Let us know how it goes? Xxxx
Wow Sarah, those Easter eggs must have done the trick!
I was truly expecting a phonecall to say my neutrophils were low but guess what? No phonecall, so I'm going for my first dose of herceptin at 9am tomorrow. Eek! Must eat loads of chocolate for every cycle from now on 😂
Rosina, I should be having my first T on Thursday as well. Anyone else?
Better go and get ready. I'm in for 6 hours tomorrow, so will need plenty of things to pass the time.
I am flopped out on my bed and I have caught up with all the posts.
Glad that I am reading them now as my anxiety levels would have increased if I had read them earlier on.
After driving myself home I decided that I needed some pampering so I called the salon that I hadn’t been to since December ( they had sent me a £10 off ‘ we miss you voucher ‘ in March and got myself a pedicure).
Of course they know that I haven’t been because of chemotherapy ( I told them over the phone) and my therapist Katie was lovely as all I could talk about was BC ( she was very interested and kept asking me questions- turns out she had lost her nan and aunt to it years ago) so I am not sure who was offering counselling/therapy to who . Think it was a 2 way thing . She sat with me till well after my toe nails had dried still asking me questions and listening to my answers. I know have a dark ‘Russian Blue ‘ on my toenails.
I walked there and back.
My Chemotherapy buddy friend saw me walking back and called me. She explained that the dark nail polish is to disguise the fact that nails can go blue / black ( side effect) from chemotherapy. She has lost her mum and aunt to bc ( I know this) but her sister is a bc survivor. Nails go back to normal after chemo.
Dose #4 is going ahead on Thursday.
Spicy sweet potato soup today- delicious. Edinbird it’s in your book page 201 if I remember correctly.
Love to all,
Talking of bloods....my neutrophils are usually borderline (high 1 point something, low 2 point something), but today they were 9.6!!!
Apparently living off Easter eggs for 2 days boosts your immunity!
Dr James, well done for getting through the funeral without it being too overwhelming. Proud of you x
Well my experience was not great on the time front Daisy! I was supposed to finish by noon to 1 ish and didn't get out of there till 4pm :cathappy:
If all goes smoothly and you don't need bloods first, you are looking at half hour cold cap each side and 1 hour infusion of T in the middle, plus usual admin time and 10 mins for cold cap to thaw out after switching it off.... so a lot quicker than FEC
I’m just going for a shower as I didn’t wash my hair after cold cap so it’s minging! Let’s see how much comes out today... 😬
I was about 45 mins on cap before the chemo which was an hour and then another 20 mins after. But it took 4 goes for cannula and cold cap faffing so I was about an hour longer than we thought. In at 11 and done at 2.30.
Im calmer after my walk certainly. But took ages so steroids were really late as I hadn’t eaten anything else... I’m going for an all nighter!