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July 2017

tatyana
Member

Re: July 2017

Hi Kimi, good to hear from you! Yes I did a little private dance, and when hubby came to pick me up he was grinning from ear to ear! Final SEs haven't really kicked in yet, not looking forward to the next week, but the end is in sight! My next step after this is surgery, scheduled for 23 Nov. I hope your last chemo is on time and all goes well!
Mishy18
Member

Re: July 2017

Morning Kimi bet you can't wait for Wed! It must feel great knowing it's the last time I'm on a count down till 1st Nov! Last one!!! No hiccups on this one would be appreciated 😂 bet you can't wait to have a little break away after this I'm thinking of booking something between last one and rads just to get away from it all
Everyone seems to be doing well atm so fingers crossed it stays this way
My son informed me the only good thing to come out of my treatment is I am now a better cook!!! Been trying out new recipes and more healthy family meals so every cloud and all that!!!

Kimi
Member

Re: July 2017

Hi Everyone. Soundsas though it’s been a better week for everyone, let’s hope it stays that way! Glad they sorted a plan for you now Michelle, hope the side effects aren’t too bad & you’ll be back cuddling Ella soon, although just as well you are on the ball, & keep checking. Hope you’re doing ok Missa after round 5, good to think just one more eh? I’m having my last one on Weds, although I have a dreadful chesty cough & think I’m starting a cold, so hope they’ll do it, I want it done & get onto rads, although not looking forward to another ten days of feeling awful. We’ve got a small break to Wales planned for two weeks time, so something to look forward to before starting radiotherapy. How are you Tatyana? Is it a really good feeling to do last one, did you do the “last Chemo dance”? Don’t think there’s a bell in my chemo suite either, but you can understand why, I’d of hated it when I was doing my first & someone else was being “released”. Like you I keep thinking last lot of steroids, last lot of injections, last lot of SE’s, hope you’re not feeling too bad, I also tell myself, this time next week....... Have you got to have the Zolondronic acid infusion for bones? Somewhere between last chemo & start of rads I have & reading on FB forum the SE’s of that can be fun too😫😫😫. Hope you’ve had a nice weekend at home Carole, I bet the foods better! Stay well & get that break to Devon, think you’ve earnt it after your hospital stay & all that you’ve been through, fingers crossed you’ll be fine now. Have a good Sunday everyone & once again thank you to all of you for being on this forum, it helps me (& hope it does all of you) to have you all here. Xxx
Mishy18
Member

Re: July 2017

Not too bad Missa got the achey joints now but so far so good x like you the tiredness creeps up! Having little naps and watching TV x pleased my nausea has settled though it's that I dread the most I've never liked being sick 😣
Missaconitum
Member

Re: July 2017

Hi all, I'm doing okay. Still taking it easy although I did manage to walk to the supermarket and back today. Will be glad when things taste right again and I'm not perpetually exhausted! Lots of sofa naps and TV at the moment. Having a cheeky little glass of wine, since it is Saturday night.
How are things going Mishy and Tatyana? Hope your SE's are manageable.
tatyana
Member

Re: July 2017

Hi Mishy, hi all! Yes it does get so boring when you can't really do much but are not poorly enough to just do nothing. Thank goodness for strictly! I hope you get to spend some time with little Ella soon, my goodness she's growing fast!
My SEs haven't really kicked in yet, I was awake reading for several hours at 2 am thanks to the jolly old steroids. Managed a little shopping trip to the nearby small town today and got two birthday presents, a pinafore dress for the granddaughter who'll be 3 and a beautiful lambswool scarf for stepdaughter who'll be 40 (don't tell her I told you!), handmade by the lady who runs a little craft shop. It's lovely to find things that are not mass produced.
Had to have a lie down after all that excitement! Looking forward (not) to slimy mouth and the runs, probably Monday, and hoping NOT to get the usual temperature spike on Thursday!

Still, these are my last injections, and I don't have the weekly trip to the lovely picc line nurses anymore. Tomorrow I can have a shower without the plastic sleeve!!! I'm so excited! We had our bathroom re-jigged a couple of years ago and have the best walk-in rain shower in the world,if I say it myself!
Missaconitum, hope you are still doing ok. Carole, I hope you are taking it easy at home and that your temperature stays down!
Mishy18
Member

Re: July 2017

Just checking in girls hoping you all OK Tatanya how you feeling have SE kicked in yet Missa me and you are on day 4 now I'm starting to get achey rank taste in mouth and generally going a bit stir crazy have read watched TV etc but would have like a little time in the garden but it's raining hate this bit!! It's just ear drink bathe sleep isn't it oh and take temp!
Bit paranoid this time as I have no injections to help my neuts so I won't be going shopping 😝I don't mind online shopping but it's a bit boring I like a good browse but I'm scared of catching bugs and stuff in the shops!!!
Looking forward to strictly tonight nd may read a book x missing Ella can't wait to see her again she's put on nearly 10oz already!!! Loves cuddles but hates the bath! I'm looking forward to taking her for a walk in her pram when I'm over the worst of these SE x
Mishy18
Member

Re: July 2017

Really sugar yeah that's interesting, I have kind of lost my sweet tooth so not too bad for me! Anything to stop those neuts from acting up!
Mishy18
Member

Re: July 2017

Brilliant tatanya bet It feels great knowing it's the last one! Fingers crossed for you SE are kind and no trips to hospital 😁 I'm hoping I will be hospital visit free this time could do with a break from the dramas of chemo! I have been quite a busy bee today done some washing hung it out and had a little tidy up! Resting on sofa now though! Got a bit of heartburn starting so need to take some ant acid I think x
tatyana
Member

Re: July 2017

Missaconitum, that's interesting about the sugar. Definitely worth trying to cut down, as it's supposed to be bad in so many ways. Hope you get on ok with the SEs this time.
tatyana
Member

Re: July 2017

Hi guys, I'm back home after last chemo, yayyy!! I know I've still got the SEs to come, but it feels great to think it's the last time. Last steroids, last injections-- can I get through it without a hospital admission this time? Who knows!

Had my picc line out, just a little dressing that stays on a couple of days and I can do whatever I want with my arm! Freedom! (Except I can't go swimming yet. I've probably forgotten how.)
Missaconitum
Member

Re: July 2017

Sheesh 90!? I'm not surprised your temperature wouldn't settle Carol. At least you're home now and hopefully going on your trip!
All the best for today Tatyana, we're not too far behind you. Give a hollar for us when you're done 🙂
I'm okay so far this time. Keeping on top of the anti nausea and spending lots of time in bed/on the sofa with the cat. Started crocheting again to keep me busy. Fingers crossed it doesn't get any worse than this.
Read a medical article recently about the effect simple sugars have on neutrophil levels, essentially it doesn't affect the quantity but can potentially affect how well they fight infection. Sugar the body makes from carbohydrates doesn't have the same
effect though apparently. Given my neut levels have been pretty poor after the first EC I'm going to try and steer clear of sugar as best I can and hope it helps!
tatyana
Member

Re: July 2017

Yes Mishy, keep pouring those fluids into you and find something good on the telly! Hope you feel better soon.
Mishy18
Member

Re: July 2017

Woah Carol bet your pleased to be home, they were high weren't they!
Tatanya good luck for today last one for you bet your relieved and can't wait for 3 weeks time when you will be officially SE free x day 3 on Abraxane and have to say you were right about the pick and mix of SE managing them quite well nausea aching fatigue horrible slimy mouth and the dreaded constipation but I'm coping OK maybe crash will hit me tomorrow but I hope not as I'm looking forward to an easier ride with this one!!
Missa how you doing on this one? Hope you OK x
Angela nearly time for you for your last one anyone of you going on to rads next like me?
I think the trick is to distract myself as much as possible and drink plenty of fluids x
Carole M
Member

Re: July 2017

Hi everyone
I eventually got out of hospital yesterday after 9 days with neutropenic sepsis.
It took my BCN and another Macmillan oncology nurse to talk to my oncologist, who only comes to my local hospital on a Wednesday. He reviewed my case and decided it was my sky high neutrophils that were causing spikes in temp rather than the infection. Neuts had gone up to 90. Normal person would be 4.
Anyway out now, temp down but I have a persistent chesty cough. Just hoping temp stays down as lm going to Devon for a couple of nights. First thing to look forward to all year x
tatyana
Member

Re: July 2017

Missaconitum, glad you're not feeling too bad. I hope you're taking the anti-nausea tablets! Take it easy and hopefully you'll soon feel better. How frustrating, having to wait all that time and then not get your treatment anyway. I think the chemo nurses everywhere are just so busy, it's amazing they manage to fit everyone in (usually!) and yet they still keep smiling (always, in my experience!).

tatyana
Member

Re: July 2017

Alas, there is no bell! They'll have to restrain me from jumping up & down going "ding ding"!

Missaconitum
Member

Re: July 2017

Good news about the injections Mishy. Hope the SE's are minimal for you. My last round is scheduled for Halloween- my 2nd wedding anniversary!
I was meant to have chemo on Tuesday. Had the bloods and went to the Maggie centre til just before they closed. Then waited in the waiting room till we were the last ones left. When I went up to the ward to ask what was going on it turned out they'd ordered in my chemo but not put me on the treatment list! Had to go back yesterday instead 😕 nurse was lovely but had to chase for missing zoladex injection then pharmacy sent up 2 of everything! Was one of those days.
I'm okay today. Tired and nauseous but I'm taking it easy.
Tatyana I'm so pleased that you're so close to the end! Does your chemo unit have a bell you can ring to mark the end of treatment?
tatyana
Member

Re: July 2017

Mishy, it's always a good idea to check, I've known them to let me go without my steroids and I remembered just in time. Great that you don't need the injections with this drug. It presumably means your blood and immune system will be stronger without artificial help this time, which has to be a good thing.
Missaconitum, you're nearly there! My last T is tomorrow, I've probably mentioned that about 15 times already, I'm so excited/nervous!
Hope everyone is having a good day. It's sunny here. And I've just had my picc line flushed for the LAST time, as they will take it out as soon as I've had my last dose tomorrow. It's been my friend on the whole, but I won't be sorry to see it go. Just imagine a shower or bath without the horrid plastic sleeve cutting off the blood supply!
Mishy18
Member

Re: July 2017

Onc rang no need for injections this time with this new drug he explained that I still need to take temp etc but only very high doses do u need the injections as this drug is usually used for me static BC or Secondary with spread so he has lowered my dose had a bad night with sleep sweats but feeling relatively well today obviously the high dose of ice steroids will be responsible so expecting to crash on next couple of days!
Carol hope you are getting closer to getting home, Missa how u feeling today you should be same as me last one on the 1st Nov! Little bit behind the others but we can all still support each other as some of you a free moving on to surgery next and some of us rads xx
Mishy18
Member

Re: July 2017

I know I rang my once secretary I. Sure they have made a mistake regarding the injections I have always had them and was neufropenic last time so think I should have had them going to ring her back again tomorrow I don't want to take any chances also the ward hadn't booked my next one in so have had to chase that up too just aswell I'm on the ball really treatment some people wouldn't question I found it strange I had no stuff to bring home have got plenty of time metrocliramide in case I feel sick but no mouth washes nothing! I think there has been a cock up reading take home meds with new drug being introduced so I'm double checking for peace of mind hahaha isn't it a great feeling knowing we only have one more to go!
Missaconitum
Member

Re: July 2017

Today I had round 5 too 🙂 so glad that the next one is my last as well!
Onc arranged for me to have 10 days of injections rather than 7 after the last round. Fingers crossed they work and I will avoid another infection.
Sending positive vibes and get well wishes to all. We're getting there ladies!
tatyana
Member

Re: July 2017

Michelle, that sounds like a pick 'n' mix of all the side effects from our old friends FEC-T! I'm sure you won't get all of them, maybe you'll be lucky and get none. Well, somebody has to get lucky sometimes, and I think you're due for some good luck!

Anyway, no injections -- that has to be a good thing! Have a good rest and we'll keep our fingers crossed for the SEs.

Mishy18
Member

Re: July 2017

Hey everyone back home from treatment no gsf injections! Drug had to be ordered on the day after all the health checks as it is too expensive to waste! That's what I was told today!! A pretty meds done IV no steroids to take at home 😉 had a big old dose today alone give with Piriton anti sickness rinitadine and paracetamol! Nurse said not usually how they do it so new to them! Ben told SE are achey joints nausea 🤐 tingling has and feet watch for temp and infection etc may get sore mouth got no take home things though so hope I'm OK x so far just feeling tired but over the moon I only now have one more to go! A little premature considering I've still got to get over SE from this one but just pleased the end is near Carol bet you feeling fed up I hope you can get home soon but at the same time you are safer in hospital x
Tatanya fingers crossed for you for Friday last one eh just think in just over 3 weeks you don't have to do it anymore and your food will taste lovely
Angela how you doing not long for you now, I know one thing this hospital business is flaming expensive what with costs etc think I need to ask about some kind if hospital transport for the radiotherapy I haven't got anyone to take me not for 3 weeks daily any way, I usually get a taxi if I can't get anyone but not everyday!!!
Bye for now going to have a lie down for a little while x
Sib
Member

Re: July 2017

 
tatyana
Member

Re: July 2017

Mishy, good luck with your new chemo, hope the SEs are manageable!
Carole, poor you, I'm sending out chilly thought waves to make your temperature drop.
I'm getting nervous about my last chemo on Fri, convinced my bloods won't make the grade, or else I'll get another temperature spike, having ended up in hospital after my first two lots of docetaxel I'm convinced the same thing will happen again. So close to the finish line, I can't believe it will go smoothly.
And yes, I know Friday 13th is just a silly superstition!
But hey, the good news is: Ladies, we can now officially eat runny eggs! But only if they have the lion stamp. I've got 8 eggs in the cupboard and not a single lion between them. I'm going to buy some more, with a whole pack of lions, and use the other ones up making cakes. Hubby has no objection!
Carole M
Member

Re: July 2017

Feel the fear, I asked at 3.00 when I'd see the dr and they insisted I'd seen one I'd never met in the morning. Eventually they admitted I was right. Put me back on IV ABX because temp spiked to 38c. Still can't go until I've 24 hours below 37.5.
Mishy18
Member

Re: July 2017

Chemo this morning! Here's hoping the SE are not too bad 🤔
feelthefear
Member

Re: July 2017

Great you’ve got your date tatyana. Not too long off, but enough to give you a small break following infusion. You’ll definitely be back on your feet in time for Christmas.

I can’t believe you haven’t seen a dr yet Carole. Why on earth not. I’m sure you’re as sick as a chip. I would be. Hoping you get some info soon. 🤞🤞🤞

Xxx
Carole M
Member

Re: July 2017

Still here. Not seen dr yet
tatyana
Member

Re: July 2017

I've now got a date for surgery, it's 23 Nov, 6 weeks after my last chemo. I guess that means that even if the chemo (13 Oct) gets delayed, they won't need to postpone the op, so that's good.

Carole, all the best, I do hope you get home today, you must be so fed up. Hugs!
feelthefear
Member

Re: July 2017

I’m stage 3a Michelle so understand the fear of it coming back. We have to do all we can now to kick its ass.
I’m good. My husband is off this week to work on the house, then off to a caravan for a few days from Thursday to Sunday. I’m taking our 3 year old grandson. He’s a boy knight 😀 so he’ll keep us on our toes for a few days. X
Mishy18
Member

Re: July 2017

Yeah I would much rather see it through I was worried if I didn't it would come back TN has a better chance with full treatment so I'm really pleased also needed to know that there was something I could have in future if needed didn't want to think there was nothing out there for me how is everyone feeling today hope you are all well and you ladies are home from hospital xxx
feelthefear
Member

Re: July 2017

That’s good news Michelle. I’m sure you’ll feel more confident knowing you’ve been able to see treatment through to the end. Hopefully the SEs won’t be too bad, but whatever it throws at you, you’ll cope. Xx
Mishy18
Member

Re: July 2017

Sorry I meant abraxane x
Mishy18
Member

Re: July 2017

Hi everyone quick update, going to have Braxane still every 3 weeks two doses starting this week don't know what day yet waiting for phone call, once said would have cancelled treatment and prescribed herceptin if I had been hormone positive but as i was triple negative diagnosis it only responds to chemo and he doesn't really want to cancel out two treatments x so back on the train with some new SE to look forward to but feeling relieved I can see treatment through as I do not want to increase my chances of a recurrence x
feelthefear
Member

Re: July 2017

I forgot to add; Michelle good luck with your oncology appointment today. Here’s hoping for a really good outcome. X
feelthefear
Member

Re: July 2017

Ahh Carole. I really feel for you and completely understand why you had a few tears. There’s not much worse than being stuck in hospital, especially when you’re being told you can go home only to find yourself in again night after night.
It’s hard to see the light at the end of the tunnel when you’re having such bad luck.
This will be over for you soon. Hang in there. I really hope you get some good news today. Sending you a big hug.

Fairy, I hope things are looking up for you and they allow you to go home today.

Xxx
Mishy18
Member

Re: July 2017

Carole feeling for you atm hope they get your nuets sorted and that infection treated xx big hugs you have every right to feel like that it's awful but hopefully you'll be home soon x
Carole M
Member

Re: July 2017

Thank you ms Merton. I'm on cycle 5 of 6 and second Docetaxel. Been in hospital since Tuesday with neutropenic sepsis, which is now just an infection that won't go away. It's my bad chemo week and I'm normally strong but they've been saying I can go home tomorrow all week and I thought I'd be home for weekend. Then OH doesn't turn up to visit until 6.30. (Visiting 11 to 8).
He wouldn't like being kept in a room with no one to talk to feeling like crap.
Ms Merton
Member

Re: July 2017

Hi Carole - we haven’t corresponded before but I just wanted to say that your post touched me.  I feel your upset and frustration.  Entirely understandable.  Hang in there.  I hope your chemo journey is nearing its end - but there is light on the other side. The BCC community will be thinking of you and sending you its collective love.  Best wishes xx 

Carole M
Member

Re: July 2017

I've had a crap day in my side room hardly seen anyone all day. Hate Sundays in hospital - nothing happens. Nobody turned up to visit until 6.30 at same time as two nurses come in to treat me. Then I said something about being shut up in here for 6 days and seen nobody all day and my daughter said "don't be crabby or you won't get any visitors" which made me cry in front of everyone. Been so depressed and close to tears all day.
Mishy18
Member

Re: July 2017

It really has been an eventful week in many ways for us hasn't it x hope you girls in hospital home and well soon hospital food ugh! With our taste buds need all the help we can get 🙂 feel really silly turns out my palpations were due to overdoing it a bit along with a not so healthy sprinkling of anxiety! Think I have just been totally overwhelmed by every that has been going on lately and of course I hate not being in contrilwkf what is happening atm with treatment I have a real stubborn streak in me a bit like a dog with a bone! When I get something in my head thats it have been fuming with myself for being allergic to the Doxycrap hell! Stupid isn't it but hey ho I will definitely know what's what this time tomorrow little Ella is coming on great looking forward to official Granma cuddle duties this week 🙂 and yes looks like the T at least let's your hair have a break too if any of you worried about that side of it now appears to be a covering of this fuzzy kind of kiwi fruit hair haha!! For how long though is the question!
Kimi
Member

Re: July 2017

Hi Girls. Another eventful week eh? I do hope it improves for you all, especially Fairy & Carole, you must be fed up with hospital food by now, that & the fact they seem to wake you up when it’s feels as though you’ve just managed to get to sleep. I’m with Tatyana it is def taking more days to feel human, but think you’re right it’s the cumulative effect probably, I’ve got legs made of jelly, tingly fingers & tongue, hoarse throat & not sure if it’s a cold or not? Hope you’re allowed a cuddle with beautiful Ella this week Michelle, you must be itching bless you. How’s that shower going Feelthefear, luxury I would think, don’t envy you builders in, we just had gutters replaced & all the banging got on my nerves, & thank you for reassuring me about nodes, but once a worrier & all that!! Let’s hope this week sees an improvement for us all, & a plan for you Michelle. Xx
Mishy18
Member

Re: July 2017

Wow fairy thats alot x bless you xx
Carole M
Member

Re: July 2017

Gosh that sounds an awful lot to cope with. I'm in hospital and struggling with just the Docetaxel. Hope you're better soon x
fairy
Member

Re: July 2017

thp is docetaxal hercepin perjetta
Mishy18
Member

Re: July 2017

Sorry to hear your poorly too fairy I would say have had some palpations when I walk too fast or too far not continously and not a problem during hospital stay just since my episode on Monday so I will be telling onc, not sure what Thp is is that your regime I do hope you are feeling better soon you are better off in hospital though so they can Mon SE take hope everyone is feeling better today, I think I need to slow it diw felt terrible last night had palpitations was getting quite worried but they settled I thinkink if it happens today I will get it checked out x I think that the problem when you feel a little better you do more then you end up feeling lousy can't stop sneezing today think I might have a head cold starting blah 😞 it's that time of the year when we need to be on our guard!!
Carole M
Member

Re: July 2017

Sorry what is thp?
fairy
Member

Re: July 2017

i had thp on 25/9 and landed up in hos on wed and still here until monday wit severe diarhea and a temp and fast heartrate.. anyone else have these side effects xx