February 2019 chemo starters

[Rosina]

Hi Seasidesar,

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.

Phew !

[Seaside Sar]

[Seaside Sar]

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.

[daisydi]

Good luck Sar xx

[Seaside Sar]

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.

Sar xxx

[Implausible]

Lovely uplifting lyrics.  Thanks for sharing, Ocean!

[Rosina]

Keeping my head to the sky 🤗

Thank you.

[Ocean21]

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.

https://youtu.be/DVzAo81RVsI

xxx

[daisydi]

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

[Trixielady]

Good luck all you beautiful ladies on our continuing journey for whatever is chucked out at us towards the end of the week xxx

[Trixielady]

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

[Trixielady]

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 

[Rosina]

For Trixielady, 

because she likes music and I like swallows 🤗one swallow

[Susie B]

Morning everyone 

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❤❤❤❤❤          

[Rosina]

Lovely one this morning.

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. 

[Implausible]

Morning all

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....

I REALLY laid into the poor young Indian guy on the phone.  Feel a tiny bit guilty now

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  

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

Sarah

[Trixielady]

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

[Rosina]

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.

[Nettienoo]

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

[Nettienoo]

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

[sandraindurham]

Just checking, anyone on Zoladex?

Good show everyone here, tackling chemo and issues, you brave girls!

[Trixielady]

Seaside sar 

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 

[Susie B]

Hi there

Good luck to the newbies starting on T and Herceptin. 

Good night 🌚🌕🛌🏾. xx

[Ocean21]

Hey lovelies,

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 Our water lilies. The water levels are not what they should be.And then there were two.The robin’s nest.Cherriesbe 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 !

[daisydi]

Im so hoping I will feel different than with FEC but Im so scared that it will be worse!

[Edinbird]

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!

[daisydi]

All these changes and additional stuff is really making me scared for everyone else and me.  Hope all goes well this week xx

[sonia28]

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 

[Marlyn]

Seaside, thinking of you tomorrow, will you be having herceptin via cannula or iv? Let us know how it goes? Xxxx

[Seaside Sar]

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.

[Rosina]

Hello All,

 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,

Rosina

[Implausible]

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

[Implausible]

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   

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

[daisydi]

Thanks Edinbird x

[Edinbird]

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!

[daisydi]

Thats good Sarah.  Who would have thought that we would all be so joyous with chemo going ahead???  When one of you have time would you let me know how long it takes with the cold cap etc. so I can get dogs sorted for Tuesday.  Thanks.  Hope you are feeling ok and hope that Edinbird has calmed down a bit!

[MBJ]

Hi Girls

Thank you for your support regarding my attending a funeral. It's all a bit overwhelming since diagnosis, which makes us face our humanity. I was ok for parts of it but some I did find distressing. 

I am glad your port is working Implausible even if it is only one way. 

Home relaxing now, high heels off thank goodness they were sooo  uncomfortable. 

[Trixielady]

MBJ 

So sad hopefully the weather stayed good, its terrible when people we know have lost loved ones comfort and loving words never seems enough xx big hugs

Implausible so pleased your sorted and chemo went ahead, fluids and rest haha don't forget 

Daisydi and Rosina big hugs xx

Marlyn thinking about you, its not easy think we're both experiencing the same kind of things breathlessness  loss of energy, I bathed but still not dressed just haven't got it in me to move, big hugs xx

Deano pleased your ok but so sorry about your friends dad, The goody bags good isn't from LGFG, its still hard not to worry about the outcome even though others are worse off xx big hugs 

Edinbird its awful chemo brain and taking so long doing things at least your hubby can get a rest from you by going to the gym just like mine otherwise they'd be going mad by now x

Nettienoo big hugs don't want to say anything and tempt things  love 

Sandra, Veronica I'm pleased your reading the posts but we're here for you both and sometimes a few nice words is all it takes to brighten up someone else's day xx big hugs

Seaside sar thinking about you hopefully your keeping busy but resting enough to xx

Sonia28, SusieB . Ocean21 lots of love to you all minds blank now xx

[Deano]

Hi Susie B

yes I’m having chemo last one June 7th (not that I’m counting down or anything) then surgery and radiotherapy everyday for 3 wks I think I have to wait 6 wks i between each treatment I also have to have an mri to see what’s left in my boob not looking forward to it last time felt like I was on a building site with noise

Sorry I hadn’t been in touch my friends dad died and I decided not to do funeral as it’s too close to home although I’ve had good days something always manages to swipe me. On a good note I did look good feel good and it was brill got loads of make up and perfume top brands and shown how to do make up ( finally at last) so many women on my course were terminal - so I’m not gonna feel sorry for myself anymore. This treatment is rubbish but at least we get the choice and it’ll soon be over- role in summer ladies to regrowing hair and eyebrows lolxx

[Nettienoo]

Flipping hec! Implausible you had me on tenterhooks there for a bit. So happy for you that port is ok. X

[Marlyn]

Phew, good to hear all ok implausible.....all systems go!!! Xxxx

[Implausible]

Good news.  Bloods were good.  And the x ray showed that the port line is still in the right place and it took the dye in ok (basically it has formed a valve so stuff can go in but blood can't get out!) so I am going ahead with chemo and don't need a cannula.  Phew.

MBJ funeral will be difficult I am sure   hope you are ok!

[Susie B]

Great to hear from you Deano and that you're doing ok. Am I right in thinking you're having chemo followed by surgery, the same as me and Edinbird? Please keep in touch, even if you just give the occasional ❤, then we'll know you're ok. And we've missed you. Take care xxx    

[daisydi]

Glad you are ok Edinbird.  Made me laugh you driving your husband up the wall.  Best get out the way for a bit!

[Edinbird]

Hello xx

Sorry I’ve not been on yet I’ve been in proper steroids plus chemo brain mode today. Going round the house starting things then getting distracted and leaving a trail of half done... took me about an hour to make food which wasn’t just for me..! Trying to get my staffs claims for the weekend processed and it’s a new system and it’s all going wrong and technically I’m off sick but just trying to get it done... finally catching up with my bestie and then replying to a million things on Facebook... now I need to get something packaged up for the post office go to do that go to the pharmacy and ask what indigestion remedy is best to take with my heart pills and go to the shop even tho I can’t remember right now what I need to buy...

So bottom line I’m fine! 😂 need to go for the walk and calm down. I’m driving husband up the wall he’s working from home today in case I felt ill but I’m making him ill instead!

[Seaside Sar]

Morning lovely ladies,

MBJ, that's a tough thing for you to deal with today. Sending big hugs xx

Sarah, sounds like you're having a mare! What a pain. Hope it all gets sorted for you. Xx

Deano, lovely to hear from you. Glad you've been doing OK and keeping busy with horses, exciting! Any recommendations on Netflix? Xx

Marlyn, hang in there girl. It's a right horrible time but you're getting there xx

Beautiful pics again, Ocean. Keep them coming. Xx

Daisy, my veins are ruined as well. More noticeable when I'm doing my stretches. They look awful! Xx

Rosina, hope the bloods are good today. Thinking of you xx

Good luck at the hairdresser, Susie. Xx

Nettie, the comedown from steroids is not fun. Take it easy xx

Edinbird, hope you're feeling OK today and resting lots xx

Trixielady, how are you today lovely? Xx

Sandra and Veronica, thinking of you both and hoping things settle down for you xx

Everyone else,  I hope the day is good to you. Thinking of you all. And don't forget, when all this is done, we are off to Barrybados for a knees up! 😎

I've had my blood test this morming. Now the long wait for the 6pm phone call...

Love you all.

Sar xxx

[MBJ]

Hi Girls

I am off to my friend's husband's funeral he died of bowel cancer. I really hope I can cope with it. Feeling very vulnerable. 

[daisydi]

Oh Sarah what a pain in the barry!  My veins are looking a bit iffy now.  Im going to try to get mine done tomorrow when Im at hospital but it may be too soon for Tuesday.  Good luck and a great big hug xxx

[Marlyn]

Oh implausible that really does suck! All you want is to get in...have your cocktail then home....I really hope they manage to sort you Hun.....let us know how you get on? Xxxxx

[Implausible]

Deano, good to hear from you!  Even if you don't feel like you have much to add (or can't drag yourself away from Game of Thrones for too long ) please do give us a quick update from time to time on how you are getting on, otherwise we worry!

As for me, I'm thoroughly fed up   my lovely port that I always sang the praises of has failed me today.  They have been trying to get blood out of it for an hour and a half and it hasn't given up a drop.

They have tried to get blood the old fashioned way too and after many attempts they managed one test tube out of my useless veins but they need two.  

Now I have to go for an x ray to see what's up with the port.  It is apparently possible that they can still use it for the chemo (if we can ever get enough blood out of me to even find out if I CAN have chemo today!!) as it is accepting a saline flush ok.  If not, that means a cannula for today (they will have a LOT of fun trying to get one of those in me!!! Anaesthetists hate me!!! ) and more surgery to repair the port.

Oh joy

It's going to be a looooong day!