61587members
324882posts
cancel
Showing results for 
Search instead for 
Did you mean: 

February 2019 chemo starters

Member

Re: February starters 2019 - yes, we rule!

Hi again Daisydi, forgot to mention, if you want to find out more about your trial go onto the cancer research UK website, type in Aspirin in cancer type/drug type box and you'll find more info regarding the trial. I used that information alongside the literature I was given by the hospital to gain a better insight of my trial. Hope this helps. Susie xx  

Member

Re: February starters 2019 - yes, we rule!

Hi daisydi 

Well done for getting through your 1st T☺, I know you were feeling apprehensive about it, along with everyone else, including me, and I'm ages away from starting it😟. The aspirin trial sounds interesting and yes when you go in a trial you do get more frequent checks. That's one of the things that swayed me in the end. Also my trials nurse explained the other day, if a trial doesn't seem to be working it is immediately stopped so no one is put at risk. I've also got a better understanding of why it can take around 10 years before a trial can be declared safe and put out for general use. As for the cold cap I found that got progressively uncomfortable, probably like you, due to thinning/bald patches. Worth perserviering with though. The WBC injections💉💉💉 can be uncomfortable at times, it's a case of trial and error until you get it right . Get plenty of rest. Take care xxxx

Member

Re: February starters 2019 - yes, we rule!

Pinch Punch First Day of The Month 858A624C-A62C-46A1-9BC7-07D554C66D57.png

 

Member

Re: February starters 2019 - yes, we rule!

Great news, Sarah! Hope you got a decent night's sleep at home. 😊

Member

Re: February starters 2019 - yes, we rule!

1C0C97B1-1AD0-47E0-9BF7-60BE7F9AF121.png

 

Member

Re: February starters 2019 - yes, we rule!

Yayyy Sarah, Sarah, Sarah, Sarah!!!!Cat LOL Smiley LOL

Rest plenty, honey!

Member

Re: February starters 2019 - yes, we rule!

So happy you are home Sarah. Xxx

Member

Re: February starters 2019 - yes, we rule!

So pleased your home Implausible now be careful rest up and drink plenty xxx big hug 

Member

Re: February starters 2019 - yes, we rule!

Glad you're home Implausible.  Take it easy xxx

Member

Re: February starters 2019 - yes, we rule!

So glad you made it out Implausable. 🎉🎉🎉

Member

Re: February starters 2019 - yes, we rule!

You've escaped☺! Brilliant news Implausible. Now get plenty of rest🛌🏾.   

Member

Re: February starters 2019 - yes, we rule!

Hi Ocean21 

More lovely photos from your garden. They certainly brighten up my day🌹🌻🌷🌳☺. I look forward to our own quince and figs looking  as impressive as yours.  Hubby came up with the name figlets the other day when we discussing the size of the figs developing on our fig tree, they're that small at the moment.  I'm really looking forward to our break in Aix. We fly out next Wednesday and return Sunday. Not long but long enough to escape all this bc stuff for a while.  xxx

MBJ
Member

Re: February starters 2019 - yes, we rule!

HORRAY IMPLAUSABLE

Member

Re: February starters 2019 - yes, we rule!

Out on good behaviour.....now, behave yourself, keep your nose clean...keep low move fast....xxxx

Member

Re: February starters 2019 - yes, we rule!

I'm home, and suddenly shattered.  Shower and bed for me.  Catch up with you all tomorrow.

Member

Re: February starters 2019 - yes, we rule!

CORSODYL

Member

Re: February starters 2019 - yes, we rule!

Fab photos Ocean21🤗

I would love to go on a ‘yoga holiday ‘ in the future. 

The day event was lovely but 15 women in a yurt was a bit crowded. I think 10 would have been a better number ( who wants to worry about banging into their neighbour when twisting left and right on their mat ?) it also got surprisingly hot in there -as my neighbour joked ‘yoga flow turned into hot yoga - and I was wearing a long sleeved T’ we had to open the yurt door.

The lunchtime was delicious though with a selection of salads , dips , bread and cheese. Also cake 🤗

Plenty of teas/coffee.

Not sure why the yoga instructor decided to light the wood stove in there in the afternoon ( as nobody was cold) she had stacked her yoga blocks along side it and a few of them started to burn. It was good that one of the ladies noticed ( we thought it was an odd smelling candle!) I did feel for her as now she has to replace at least 5 or 6 blocks.

 I have done yoga outside and I think that is much better, weather permitting. The yurt was great for all the other stuff we did .

Re. Toothpaste and mouthwash we use here at home and so far no lurgies for me.

Yes, to brushing teeth and gums vigorously ( especially when gums are bleeding). Baking soda gets our vote too, as does floss and inter dental stick things.

Yes, I agree we have great sitcom material 🤪

MBJ
Member

Re: February starters 2019 - yes, we rule!

Hi Implausible

Well you could not write fiction like this could you. White cells too high now well I never. Hope you get home soon. 

Nettienoo so pleased you are going home, but better to be safe than sorry.

Everyone else who is feeling poorly today I hope tomorrow will be better for you. 

Good luck with your jigsaw Trixie I started one back in December but only got as far as the edges, it's under my bed now. 

Hope everyone has a better day tomorrow. 

Member

Re: February starters 2019 - yes, we rule!

Hello beautiful ones,

Trust us to have our first ‘political ‘ prisoner in exotic SwindonSmiley Happy  

 

Then we’ve had the poo debacles and farting stretches and corpses and post yoga body armour. Grey skin and make up trowels We should get together and write a honest but tongue in cheek leaflet on chemo side effects Smiley Happy I think it’d be quite fun 🙃.Yes side effects are serious but sometimes you have to see the absurd side and have a giggle. I know I do. Thanks for the laughs reading through your posts

 

MBJ , the choir sounds great fun and a really lovely sisterhood.I think Seaside Sar joined one. I can’t sing a note well done both. Courtesy of the guy in the link ,I was listening to gospel singers yesterday evening, trying to relax before sleeping. You might like his Golden Girls skit. Wait until you see what he does at the end😉

https://youtu.be/tD6Y-iiw0TM

 

Sarah, so glad that you’re on the mend. Well done pointing out the reason for your raised WBC and you meds. Just shows you how poorly integrated cancer care is in general medicine .

Your embroidery art is lovely. Love the one of ?Icarus guy flying close to the sun. How talented you are.

 

Rosina, the yoga retreat sounds great. I’ve often looked at them and thought how great they’d be to experience. Always wanted to do a meditation retreat too. 

 

SusieB , glad you’re gremlins shrinking. Aix isn’t far away now. How excitingSmiley Happy

 

Sorry for not remembering who had the mouth problems. Hope the antibiotics are helping. Be careful of refined sugars and sugar additives. Mouthwashes haves a bucket load of sweetners in them  so , yes they taste nice but there is a price. Sodium bicarbonate is what they prescribe over here and that  works. I have some powdered vit c that I also take if my mouths bad. Doesn’t taste great but  a swoosh around with that after cleaning my teeth really helps. I stopped using toothpaste ( loads of sweetners in them) a while ago , I use interdents and brush my teeth really really well. I used to have bleeding gums then I noticed that when we ran out of toothpaste and  we were tardy getting some more,I didn’t have so much bleeding. So stopped using it and now rarely have any bleeding. Rosina,your hubby will probably be horrified but it works for me!

 

Everyone going through the Taxol valley, hopefully you’re out the other end.Had my first session today. No aches yet but had a good sleep this afternoon. Need to go and eat . That’s certainly different from EC ,couldn’t face even the thought of food... and th3 smell of cooked food or food being cooked , horrendous. Fingers crossed I won’t fare too badly acheswise. I saw an intern today and mentioned the aches and pains you’ve all been experiencing and she said that tends to happen more with women on immunotherapy along side the Taxol. No idea. Haven’t looked it up yet but we’re all on such different treatment plans who knows who’ll experience what !!

 

Take good care all.

 

Some picsF96C3755-6B2D-4AA2-A8BC-FDC20E39811D.jpegQuinces lovely quinces.255A44B4-4F17-4EA8-9FC2-FEB3FFF977D0.jpeg32DC5D21-C947-471E-8971-4DDC4DBD6037.jpegArtichokes starting to do their thing.06840078-E4B7-4566-8EE9-CF52CF6EC4E1.jpegHad a good bit of rain so water levels ar3 back up thank goodness.AD8108A5-F1DF-4B30-8E74-FD1F9977CB9E.jpegThe village woods.

 

 

 

 

Member

Re: February starters 2019 - yes, we rule!

Only 2 more!

Member

Re: February starters 2019 - yes, we rule!

Well done Daisy!

 

Well done for dodging admissions Nettie! And hope you and everyone else who is under the weather feels much better soon.

 

I had a walk to the Post Office and garage to book my MOT, still felt like my legs won’t work properly like my muscles have atrophied but clearly they haven’t. Tight chest too. It is low immunity week so I shouldn’t push myself too much I guess, it’s only Tuesday.

 

I have a fun day tomorrow of windows being mended and my boss coming round, hoping they don’t both happen at once but probably...

Member

Re: February starters 2019 - yes, we rule!

Well done Daisydi, I’m sure you must be feeling relieved it’s over as I know you were worried about the 1st T. 

Implausible....for Barry’s sake.......I really hope they get a grip soon and actually listen to what you are telling them. Please don’t let this put you off getting checked out in the future though love. If you feel unwell and have a temp you must always go and get looked at. Xxx

Member

Re: February starters 2019 - yes, we rule!

Hello all well Ive been T'd. Got home about 3 and took dogs straight out. Took more steroids. Think I'll leave off the anti sick meds just took one before the infusion.  Feel fine so far much better than FEC.  This time I have got my first ever WBC injections to do on day 3,4 and 5.  She said the T really wipes out the immune system.  I also been asked to go on the aspirin trial which I am quite keen on.  Apparently it may help with recurrence and as long as my body can take it I think I will give it a go.  Also means I checked on more frequently over 5 years so I am keen on that too!  The cold cap was really uncomfortable today found it much colder but maybe thats because my hair is thinner.  Sorry to hear that some of you are still unwell.  Hope you get out today Implausible and glad that you have had a reprieve Nettie.  Hope you feel better Seaside, Sonia and Trixie.  Have to go wash my straw like hair now. 

Member

Re: February starters 2019 - yes, we rule!

Oh for Barry’s sake!

Highlighted
Member

Re: February starters 2019 - yes, we rule!

Oh, blimey.

 

I think we have solved the mystery of the weird blood results, although I still need to convince the docs here!!

 

So..... turns out it wasn't my CRP protein yesterday that was too high.  Junior doc got that wrong.  It was my white blood cell count.

 

And it is still "too high" today so they are still saying no go home.

 

But what do we have to do after chemo??  Jab ourselves in the tummy with something specifically to boost our white blood cell count!

 

Pointed that out and doc is all "filstagram  wouldn't still be working if you did the injection on Wednesday"  but of course I am on Lonquex not filstagram which is the longer lasting pricey private one that you only jab once.

 

Doc has gone off all confused.  I have rung my chemo team who have confirmed that with lonquex it is perfectly normal and expected for my WBCs to be elevated a week after chemo.... that just means it is doing its job!!!

 

So basically all this fuss has been for nothing.

 

Now I am waiting for the doc to come back and I hope I can persuade her!!!

 

It is all well and good going private but when they use methods and meds that the NHS doesn't use, it doesn't half cause problems!!

 

 

 

 

Member

Re: February starters 2019 - yes, we rule!

If anyone needs to escape from the world of bc and feeling crap, 

I thoroughly recommend this podcast:

https://twitter.com/trojanwarpod/status/1123187446747783168?s=21

 

and 

https://podcasts.apple.com/gb/podcast/odyssey-the-podcast/id1460697746

Member

Re: February starters 2019 - yes, we rule!

Afternoon ladies 

Implausible pleased your feeling better and hopefully you'll be better on the antibiotics 

Nettienoo so pleased they didn't admit you again fingers crossed with plenty of rest and antibiotics you'll improve quickly xx

Seaside sar hope you feel better soon xx

Sonia28 hope you feel better soon xx

I'm suffering from heartburn again although I'm already taking medication for it, not dressed today trying to do a jigsaw a lovely picturesque view from Bayeux France

Thinking about you all on here even if i haven't mentioned you just getting lazy again xx

Member

Re: February starters 2019 - yes, we rule!

I do generally try not to do them too publicly Smiley Very Happy

 

But yes, I know what you mean Smiley Happy

Member

Re: February starters 2019 - yes, we rule!

I hope you will be following soon Sarah. Only been here 5 hrs so far and already had enough. If you feel like you need a poo try and make it a furtive one eh? Xx

Member

Re: February starters 2019 - yes, we rule!


@Nettienoo wrote:

They are letting me go home with oral antibiotics. 💃🏼💃🏼💃🏼💃🏼💃🏼💃🏼💃🏼 😀😀😀 x


There is a God!!  Or something!!!

 

I am so happy for you Nettie!  I was holding my breath

 

 

Marlyn , fab news about the LGFB session.  I am usually not at all into "pampery" type stuff but I must admit I really enjoyed mine.  Plus, all those freebies!!!

 

And Susie, I might enquire about an upgrade to an M4 view room Smiley Very Happy  mine looks out over the courtyard, which should be nice, but it is just full of hack-coughing smokers!

 

I'm now awaiting a verdict from a blood test they managed to take at around 1pm

 Wish me luck.  If they still say no, start working on those sandwich boards Smiley Very Happy

Member

Re: February starters 2019 - yes, we rule!

Good news Nettienoo.☺☺☺ 

Member

Re: February starters 2019 - yes, we rule!

Marlyn I adore your sense of humour😂. The LGFB session is brilliant. For me it came at just the right time as during the past few days, for some strange reason, my eyebrows have decided to pack their bags and join my missing hair. As for the trowel and polyfiller, sorry, I think I used it all.    

Member

Re: February starters 2019 - yes, we rule!

They are letting me go home with oral antibiotics. 💃🏼💃🏼💃🏼💃🏼💃🏼💃🏼💃🏼 😀😀😀 x

Member

Re: February starters 2019 - yes, we rule!

Seaside Sar, sonia28 and Nettienoo, sorry to hear you're all feeling under the weather.  Here's a few virtual hugs wishing you all get better soon ❤❤❤❤❤❤. Love the idea of 'free the Swindon one'. Hope you escape soon Implausible. Funnily enough Swindon is the only hospital I've ever been admitted to, (apart from Basingstoke maternity ward), when my eczema when wildly out of conrol. Lovely views of the M4 from what I can remember.

Rosina, I'd have got on the swing too. When Chris was young we bought him a swing/slide/climbing frame combination and because I'm only small I'd often sneak in the occasional go on the swing. The slide was a bit of a sqeeze. Ouch! I was quite sad when he outgrew it☹.

DiKat, thanks for dropping in frequently with extra information and tips for us all. It really is appreciated.  

Member

Re: February starters 2019 - yes, we rule!

Whooo hooo......my day just got better, the lady from the look good feel good course just called, I'm booked in on the 17 th June....by heck I'll need it by then! I will need a goodie bag the size of a hot air balloon, hope there's a trowel and plenty of polly filler in it! Xx

Member

Re: February starters 2019 - yes, we rule!

I always love those (usually American) programmes where they build the most amazing tree houses.  Always makes me wish I had one but then I realise I'd probably never use it.

 

It's like people who have art studio sheds... they look great but I bet if I had one I wouldn't actually go out to it in the dark and the cold.  

 

I already have a separate room IN the house with all my art stuff in it, but still 9 times out of 10 I do all my painting downstairs in the living room on a lapboardSmiley Happy  just feels more like I'm being part of the family that way.  Even if half the time the other members of said family have wandered off somewhere else!

 

I'm with you on swings though.  They will never not  be cool

 

 

 

Member

Re: February starters 2019 - yes, we rule!

Hi Sarah, 

it’s impossible for me to ignore a swing 🤗

wish I could have one in my backyard.

 I did have a giggle trying to jump on ( x3 attempts).

Now I am flopped back on my bed. 

Just hugely grateful that my body is out of yesterday’s armour !!!!!

 I am also continuing to drink loads.

Hugs,

Rosina

PS can I have a tree house too 🤪

 

Member

Re: February starters 2019 - yes, we rule!

DiKat you are always so good to us popping from our "future" to help and reassure

 

Thank you so much for that.  I know we talk a LOT in here so we can't be easy to keep up with Smiley Happy

 

Since being stuck in here with nothing much better to do I've done a lot of googling, and it seems that your experience of "running slightly hotter" under T is not unusual.

 

I think in future cycles I will give my temp a little bit more encouragement to come down before panicking  and going to A and E.  Unless it is a really high spike of course.  Because in the end I came here with a temp only about half a degree higher than my usual, as I usually run around 37.2 or 37.3 anyway.....  and as it turns out my neutrophils were fine.

 

Ah well you live and learn.  I obviously wouldn't ignore it if I felt properly unwell or if I couldn't get it to cool down after a couple of hours....

 

Rosina, as ever, you are an inspiration but please don't overdo it!

Member

Re: February starters 2019 - yes, we rule!

Thanks for this Dikat, 

I think I enjoy being blithely ignorant.

Sorry to hear that Seasidesar, Nettinoo, Sonia28 are all feeling crap. 

Sarah, hope you are let out soon.

Edinbird, I have been for a walk.

 I saw a swing and swung on it too 🤗AF1289C2-8658-4A8F-BA78-68A90D3EAFDA.jpegSimple pleasures

The deer were keeping an eye.

Marlyn you do make me laugh 😆 

Member

Re: February starters 2019 - yes, we rule!

So sorry to hear that so many of you are having a rough time at the minute with hospital admissions, aches & pains, thrush etc.

I don’t know if there is a reason for it but my temperature was higher whilst on T. I’m normally a 36.5 to 36.9 kinda girl but it seemed to be around 37.4 to 37.6 most of the time. Having my wig on also made me warmer so bare that in mind if wearing any kind of head attire ladies. 37.8 was the point I took myself to a&e as that was the point I’d got neutropenic sepsis with Fec. Keep being vigilant ladies!

Just keep a close eye on that thrush Sonia28. It can travel further down your gullet. Nystatin wasn’t effective in my case...the oncology nurse said it’s such a small amount and low dose it’s often not effective and best to get Fluconazole prescribed. That tends to get on top of it pretty quickly.

Look after yourselves ladies and hope you’re all on the up soon. I’m now 20 days post last T and my neutrophils were only 1.25 yesterday so our immune systems really do take a battering often without us being aware. Hugs to all 🤗xx

Member

Re: February starters 2019 - yes, we rule!

Oh Nettie I hope you don't end up back in the hospital!! Please keep us updated!

 

 

Member

Re: February starters 2019 - yes, we rule!

Sonia, glad you’ve seen a dr and got something for that mouth. Hopefully when the meds kick in your sense of taste will improve. 

Implausible, do you need a “free the Swindon one” protest organising outside the hospital? I’m sure we can arrange something between us😘

Member

Re: February starters 2019 - yes, we rule!

I'm so sorry so many of you are feeling so yuk.......nettienoo...please god your good to go home and curl up on the sofa....fingers crossed for all my beautiful sisters who are feeling grotty.....xxxx

Member

Re: February starters 2019 - yes, we rule!

Hi lovelies, I’ve kept quiet on the personal info front the last few days as I’ve been a bit under the weather since Saturday but had managed to stay out of hospital. I’ve got really painful glands on one side of neck and feel a bit grotty but  they don’t appear swollen. . My temp has been ok so I have just been resting and hoping things improve,

determined I wasn’t going to end up in hospital Now chemo 3 +13 days and the pain in my neck was worse last night so had to take ibuprofen and paracetamol alternatively every 2 hours.

i finally succumbed to ringing for advice this morning so now sat in Oncology triage. The blood test better show all is well so I can go home with antibiotics or better pain relief. 

I AM NOT BARRYING BEING ADMITTED! Xxx

 

Member

Re: February starters 2019 - yes, we rule!

Sar, hope you feel better soon, I’ve been feeling pretty rotten, my temp had been constant 37.5 which is running a bit higher for me but nothing major. I’ve been to dr this morning, got nystatin for the oral thrush and hydrocortisone cream for my rash. I felt like a bit of a zombie walking around, managed the pet shop after then back to the sofa to veg out now. 

Trying to work out what I can drink that tastes vaguely okay. 

Hope you get out soon Sarah, it is madness when they keep you in, but they are aring on the side of caution.   

Member

Re: February starters 2019 - yes, we rule!

Sar hope you feel better and on the right side of 37.5 I always panic when I hit 37 as I often take a while to get it over 36!

 

Legs still not right. Had to run down the stairs to get the door (fortunately I was 10 secs away from getting undressed!) and I feel rather weird now! Must just be general weakness though as I’m not sore.

 

I will try a walk later and see how that goes but right now I’m getting stuck into reviewing a document that I’m quite enjoying so this will be fine to keep me occupied today.

 

Re sickness meds I was given one tablet before the T started and then Metroclopramide which I’ve had all the time. I wasn’t given my other sickness meds which were Granisetron they said I didn’t need those anymore. Tbh I’ve never really known which I’ve needed as I’ve had no nausea to speak of

Member

Re: February starters 2019 - yes, we rule!


@MBJ wrote:

Hi Implausible

If you are still bleeping to be free from the drip and just need to walk somewhere just take the electric lead out of the back then plug it back in when you get back to bed. X


Oh I have been, I've been taking it for walks like a puppy Smiley Very Happy

 

The actual drip  finished 2 hours ago.  So it doesnt need to be plugged in....  just need someone to come and unhook it and give it a flush

 

Seaside, so sorry to hear you are under the weather Smiley Sad  keep us updated!

Member

Re: February starters 2019 - yes, we rule!

Hi everyone,

 

I'm still feeling barry awful so I'll keep this short.

 

Good luck today, Daisy. I got given Ondansetron just before my T infusion and I haven't suffered from nausea. At least that's one positive of T.

 

Sarah, what a pain that they're so keen to hold onto you now. I can imagine you're going stir crazy. Hopefully they'll let you go home soon.

 

My temp was borderline all day yesterday, staying at 37.5 which is high for me as I'm usually a cold fish. I just kept taking paracetamol and opening windows so in the end it dropped to my usual level. Hubby was all ready to wheel me to the hospital but I wasn't tempted.

 

Staying in bed today and hoping I get over the aches and pains that I still have.

 

Take care all.

 

Sar xxx

MBJ
Member

Re: February starters 2019 - yes, we rule!

Hi Implausible

If you are still bleeping to be free from the drip and just need to walk somewhere just take the electric lead out of the back then plug it back in when you get back to bed. X

Member

Re: February starters 2019 - yes, we rule!

Hi Daisydi 

I didn’t have any anti- sickness meds for T. Just the high steroid dose ( a day before, during and 1 day after).

They did offer me anti- sickness meds to take home with me ( after being dosed) but I didn’t take them as already had plenty at home.

I didn’t experience any nausea with T which was fantastic and my appetite has been good.

Hope this helps,

Rosina