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October 2017 Chemo Starters

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Re: October 2017 Chemo Starters

Oh whtyefawn I know exactly what you mean. I try not to dwell on it too much but I don’t recognise myself anymore. I have gone the other way and put weight on but not letting myself worry about it till next year. I had an active lifestyle and now don’t have the energy to do much at all. It will all pass and hopefully I will just have my scar which I kind of don’t mind as a reminder of what I went through. It will be just part of the total package of what makes me me if that makes sense xx
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Re: October 2017 Chemo Starters

Just had one of those moments. I usually have a lance over my body before I go in the bath check for anything out of the ordinary. Tho I really noticed tonight how my body is suffering. Back in July before **bleep** hit the fan I was about 10st. I am now 8st 7lb. My legs and arms have lost all muscle definition and are just sticks. My skin is clearly thinning as veins can be seen that weren't there before. Now the steroid glow has gone there is little colour to my face. And thats before the effect of surgery. Our poor bodies 🚶‍♀️
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Re: October 2017 Chemo Starters

Grab my hot pants someone. Flush was sort of ok but they were concerned with my rash, they said rash is normally a T SE. They drew around it with a sharpie and I’ve got to call if it gets worse. In the end I got home from the flush to find I’ve got ANOTHER uti. Temp ok and when I rang unit they were happy for me to get antibiotic from gp and see how it goes over weekend. I start co-amox on Monday so that should help. Why is it always the weekend, I don’t want a trip to A&E.

I would recommend co-dydramol rather than co-codamol as the codeine in the latter might bung you up. Mind you, maybe Runnerbean should try that! Also, be aware that both have paracetamol in them, be careful not to overdose on that if you’re taking paracetamol as well. Also the dihydrocodeine in co-dydramol is good for bone pain. Take temp first before anything with paracetamol in it as it might lower your temp. I’m not a pharmacist, just nearly forty years of neuropathic pain.

Good luck to all today’s chemo ladies. Let’s hope you can all get some good sleep.
Shi, I can dig out son’s longboard to help with the horsebox.

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Re: October 2017 Chemo Starters

Pmsl it says on outer packaging msg cause drowsiness x I blooming hope they do 🤣🤣🤣😢
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Re: October 2017 Chemo Starters

Sleeping tablets prescribed by my gp I called them from chemo ward as they hadn’t got a doctor on today and nurse explained situation to doc
I got zimovane x never took sleeping tablets before so I hope I am okay with them xx
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Re: October 2017 Chemo Starters

😂🤣😂🤣😂🤣Sue, typo SE is back!  Did you mention that to your team, what did they prescribe? 🤣😂🤣😂

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Re: October 2017 Chemo Starters

Sorry so glad

I got the typo side effect already lol x
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Re: October 2017 Chemo Starters

Meesh sonhlaf you had fun with your family xxx
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Re: October 2017 Chemo Starters

Runnerbean, sorry you're having to stay in case nhs and also that doctors did not seem to have a clue!

 

Jelly really hope you don't have any of the SEs that you don't have meds for! Again it's strange how different hospitals handle things, some seem to give you something for every eventuality and others seem to be scrooges when it comes to meds 🙄

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Re: October 2017 Chemo Starters

Eventually ladies! Well done sue, Rach and jelly for chemo 4 rest up and drink loads. Hope you manage to get some sleep. 

 

Ruth, loved the video clip! 

 

Spent nice day day with mum and sis went out for tea and cherry Bakewell cake 😋😋😋 they are staying over tonight. You'll all be very jealous but sis has bought me some of those Asda Wonder Woman pants! ☺️So I really can put my wonder women pants on now! Will be twirling my way to next chemo 😂🤣😂🤣😂🤣😂

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Re: October 2017 Chemo Starters

Hi ladies a nice friend of mine just sent me a message and I thought I would share it with you as it is so true and we should all be so proud:

Well done for just getting through each of these horrible days. Each day is a triumph.

Wishing everyone restful evenings especially our chemo ladies from today. Sweet dreams xxx 🐑🐑🐑🐑😴😴😴😴😴
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Re: October 2017 Chemo Starters

Hi sue, I’m bed already again, just resting and sleeping and doing what body telling me to do. 💕💕everyone shi xx
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Re: October 2017 Chemo Starters

Thanks Shi, I read about all the possible issues on T and had a list of things I might need but the nurse dismissed everything saying all those side effects were very unusual so they don't prescribe anything, I'll manage as I've got stuff in but am cross she just poo.pooed ( pardon.the pun) everything I said . Hey ho I'll get over it .
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Re: October 2017 Chemo Starters

😘😘😘rest up sue😘😘😘 I cant believe I’ve read that, trained nhs staff needed it explaining to them what the injections were for and also stood and watched while you’re oh did your jab!!! But then again Ruth didnt you get told to show the district nurse how to flush your line through? Clearly basic training refreshers to ensure people who claim to be “qualified” are actually capable and competent at doing what they are paid to do, another thing to highlight at the end of the process If we want a change for others who will unfortunately follow on a bc journey. Sorry but in 2017 is this really acceptable practice for the uk? 💕💕shi xx
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Re: October 2017 Chemo Starters

Runnerbean sorry you still in hospital
Cassie how are you
Shi hope your ok
Karen have you rested
Meesh, Ali, reboot, chaffinch, and sorry if I missed anyone but hugs to all
Dizzy and jelly we survived another train 🚂 ride 4 down and 2 to go .... I am staying on track even with the bank holidays and next up on 05/01/2018 at 11.00 xx you ladies still staying at 3 weeks ?
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Re: October 2017 Chemo Starters

Love the video

I feel Exhausted and wired had 2 and half hours sleep last night cause of steroids got some sleeping pills of doc just to take on the steroid days so will be bath, pj’s, bed and pull popping and hope if a good nights sleep

My team said ibuprofen and co codamol for pain relief and got immodium and lactulose to cover either eventuality with the tummy/bottom

Also got my 1 a day antacids and sea bands on so got everything crossed and hopefully covered x
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Re: October 2017 Chemo Starters

Oh dear - hope you get to rest up and things resolve overnight ♥️♥️💕💕
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Re: October 2017 Chemo Starters

Hi Ruth, it’s a no to teaching the doctors what cancer is and getting home tonight 🙁we had to explain the white blood cell injection to them last night. In the end they just told my husband to do what he usually does while they watched which he said felt really weird xx
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Re: October 2017 Chemo Starters

Here it is again - we will give them hell 😁😁😁
https://youtu.be/q5_8ZisNSk8
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Re: October 2017 Chemo Starters

Runnerbean have you managed to teach the hospital docs what cancer is yet?!! My aunt tells a story of going to a gp and him insisting that her T nails were a very bad fungal infection and telling her off for not getting it treated sooner!!!! In the end she had to ask for another doctor in the clinic to come in and back her up that they were a chemo SE!!
Any likelihood of getting home tonight? Hope you are feeling better soon ♥️♥️💕💕 we will have to hijack the chemo 🚂 And come liberate you 😁🏑 🏑🏑🏑🏑🏑🏑
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Re: October 2017 Chemo Starters

Good idea Ruth! Xxx
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Re: October 2017 Chemo Starters

Hi jelly tot, this is list for t that May ladies shared with us a while back. Loratadine antihistamine, episode salts for baths, Imodium, up the carbs in the diet, udderly cream with added urea from amazon, my mouth went fast on the t and went on the fluconzole from onc by day 5 also using difflam mouthwash. 😘😘😘hope that helps a bit, it is 😳😳😳swapping over, we just have to take it one day at a time and pull the gold hot pants a bit higher 🤪🤪🤪🤪💕💕check out Ruth’s earlier post with attachment, it’ll give you courage as that’s all of us on our 🚂😁😁😁💕💕shi xx
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Re: October 2017 Chemo Starters

Karen I was just thinking exactly the same! I wonder how many of them have actually seen a patient in the first week or so after chemo??!!
We def need our Wonder Woman pants and whips!! I plan to go to my onc next week with a list of meds to manage T SEs based on all the wonderful advice of the ladies and n here so will be interesting what she says!!! 📃📃📃
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Re: October 2017 Chemo Starters

Reading today’s posts it does seem like these doctors that we put our trust in haven’t got a bloody clue what they are talking about!! I think we are better at self diagnosing!!

 

think we shld all stick our Wonder Woman pants on and make a stand!!

 

 

🦄🦄😘😘

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Re: October 2017 Chemo Starters

Not in my experience jelly tot. Looks like it’s given me 2 nights in casa NHS now and I know others are suffering xx
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Re: October 2017 Chemo Starters

Good idea , she also said diarrhoea was unusual.... ??!!!!
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Re: October 2017 Chemo Starters

Jelly tot I would get extras off your GP if you need them. Most seem happy for us to go with a shopping list. You will want decent painkillers for the T I find a mix of co codamol and paracetamol when it’s not to bad works for me xx
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Re: October 2017 Chemo Starters

First T done . Interestingly they give the 7 gcsf injections with T as it's harsher on.bloods ?? Also they dont give any pain meds as pain is an unusual side effect..... ffs I got the Argos trainee today ... will.stock.up.myself. x
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Re: October 2017 Chemo Starters

Turns out there was no real reason for the commode so I have said I dont want it now. Just got a mobile drip stand instead so I can try to keep whatever I have left of my dignity. I said to my husband I already whip my top off for any man who looks like a doctor to poke at my boobs. He says he’s going to buy a stethoscope and see how many ladies whip there tops off for him! xx
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Re: October 2017 Chemo Starters

Sue welcome back on board, look at Ruth’s earlier post with attachment 😁😁😁just what we all need 😁😁😁I was last Thursday runnerbean. We’ve got hold of your gold hotpants darling and caddies on the way with her 🏹meesh bit of 🔫🔫🔫and dizzy might need you to nip off roof and give 🚂👨‍✈️A bash with your 🏄‍♀️For good measure. 💕💕shi xx
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Re: October 2017 Chemo Starters

I find they are always running late Sue. If they tell me 10 I expect it to be about 11 now. Glad that’s another one down for you as well now xx
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Re: October 2017 Chemo Starters

I think I was the day after Shi, I’m always confused if day of chemo is day 1 or day after. I have Imodium on prescription as I suffered a little with this on FEC but the first T is a whole new ball game 🙁at least I know there is nothing really wrong just need to look after myself better and maybe I also need a bit of botty buttering now 🔦! They have just had some little kids on the ward singing Christmas carols. I watched from the safety of my room and it made me cry. Must be getting soft in my old age. Still no sign of me escaping this place xx
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Re: October 2017 Chemo Starters

Appointment at 11 but they were running late so only just gone out 4 down 2 to go xx
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Re: October 2017 Chemo Starters

Hi runnerbean, did you switch to T same day as cassie and I then last week?  Very glad to hear bloods are ok for you.  May ladies have said use Loratadine tablets, i started mine the next day. My mouth went down hill fast and luckily onc had given me 7 day course of fluconozole which I started day 5 so hope that keeps that at bay.  The May ladies also said take immodium tablets to stop hurricane botty, there is quite a juggling act on the T chemo, its just a case of balls in the air and pray.  I just wish we could all be like those ladies I meet in the onc clinic who have luckily sailed through fec and are sailing through t, I wish everyone going through any kind of chemo was a lucky as them.  Also May ladies advise us to up our carbs to help ttry and keep food in tthe body longer during T.  Think because I was on steriods and the antisickness tabs too that blocked my botty up good and proper till around a couple of days ago and I was actually on the senokots till then.  Keep the fluids going into you too runnerbean and sending love and sparkles to you darling.  love shi xx

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Re: October 2017 Chemo Starters

Hi ladies, hope everyone is back from treatments safely today. I’m still stuck in casa NHS having my second 8 hour bag of fluids. They won’t let me go home until my bottom behaves itself so the only answer may be a cork 😳good news is my blood tests show there isn’t actually anything wrong with me so hopefully I will be released soon and can get a good nights sleep in my own bed 🛏. Ali it is day 8 for me so it seems this may be something we should be looking out for around this time. I just find it frustrating explaining to the Doctors over and over again about white blood cell injections and other medications as they don’t seem to understand them. One actually said to me today so why are you having chemo 🐟🐟🐟xx
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Re: October 2017 Chemo Starters

😁😁😁brilliant attachment Ruth, Just what we all need to get the 🥊🥊🥊🏑🏑🏑back to keep going, thank you 😘😘😘💕💕shi xx
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Re: October 2017 Chemo Starters

Welcome home safely Dizzy. We do like to count them out and then count them back in 😁♥️♥️💕💕💕
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Re: October 2017 Chemo Starters

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Re: October 2017 Chemo Starters

😘😘😘welcome back on board dizzy 😁😁😁rest up and fluids lovely 😘😘😘💕💕shi xx
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Re: October 2017 Chemo Starters

I’m back from FEC 4. Slept through it again. I’ve had lunch and I think I’m off to bed 😳
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Re: October 2017 Chemo Starters

Hi chaffinch, bet you can’t wait to see them it’s crazy how quick Christmas has come round now isn’t it. Yep naughty 🚂👨‍✈️Back under the 🔫🔫🔫of meesh now and those currently having a quick 🍰stop are also picking up a few next catalogues to see if there are any rads pants we fancy ordering ready for rads with all the surfing and spinning going on this cycle the gold hotpants are having their Lycra content put to the test a bit 😁😁😁😁cassie try not to rub or touch them, I’ve just used face wipes and acqueous cream on my face and no mascara since start of chemo (I’ve not been out other than to appointments) so not had to bother. Hope that helps keeps yours a bit longer lovely. Ha ha that horse box will be busy, we’ll get moms hotpants to distract security while shoving skateboards under it for easy movement and rolling up into horsebox, anyone got any skateboards? 😁😁😁💕💕shi xx
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Re: October 2017 Chemo Starters

Wow ladies, didn’t get on here yesterday, marking preparations for YD coming home from uni today. 101 posts, we really are a chatty lot! Plenty of laughs as usual ❤️
Just had a lovely text from YD she just said so excited I could literally burst and when I asked why she came back an said because she gets to see her mum. I burst into tears. I’ve only seen her a couple of brief times since the middle of September because she is paranoid about making me ill with fresher diseases. She is such a sweetheart, I’m so lucky to be so close to my children I have never had that kind of relationship with my mum, we get on but not really close. I couldn’t wait to leave home and I couldn’t live with her for any length of time like others have said. My son also sent me a rare message the other day saying how much he’s looking forward to being home. I haven’t seen him since the beginning of September and have only actually spoken to him once. We message each other every few days though.
Hope you are all having a better day today, there do seem to more hospital visits etc going on the more we get into chemo 😞. Our office is full of lurgy at the moment just waiting for OH to get something. It’s Christmas jumper day today which we always go for in a big way plus it’s always one of our busiest days of the year but I’ve had to stay at home. I’m all dressed up with nowhere to go 🙄. Going for a walk in a minute where I might get some funny looks. 🤣
Take care ladies and good luck to those of you on the 🚂 today x
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Re: October 2017 Chemo Starters

I can really tell my eye lashes are coming out now. I'm having to fish them out of my eyes every few minutes. 👀
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Re: October 2017 Chemo Starters

Sorry to hear you've had an unplanned mini break. Any other location this would be a good thing. Hope you feel better very soon.
Popped out this morning to the local farm shop garden centre place to stock meat up in freezer. Saw the most amazing thing ever. A huge singing reindeer!!!! It was awesome I stood mesmerized watching it. So once we've liberated the unicorn in Selfridges in Brum we need to head up to north east Derbyshire and liberate the reindeer. Sue's gonna help as it's too big for me to carry on my own.
🦌🦌🦌🦌🦌
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Re: October 2017 Chemo Starters

Buddyfan have a safe trip with the flush 😘😘treatment girls let us know when you are back home safe lovelies 😘😘😘runnerbean how you getting on this morning? Sue please say hi to jencat from me too. Mrs rims, let us know how the ticket change is going we’ve still got your seat and glass of champagne onboard for you 😁😁😁💕💕shi xx
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Re: October 2017 Chemo Starters

T time, I’ve got a Groshong line and mine took about hour, inc flush each end. Taste goes quickly, day after. Sounds like pain for a lot of you so get those co-dydramol or co-codamol (I prefer co-dydramol, less likely to bung you up), ibuprofen and Loratadine. Flushed, breathless, high heart rate, all SE I had.

Do you know, I rarely laugh out loud even before chemo, but this board succeeds every day. Thank you ladies. 💕💕

Runnerbean, they’ll get you sorted, hang on in there. I’m avoiding everyone atm for risk of infection.

Meesh, have a lovely day but don’t do too much. I haven’t seen my sister since July as she lives in Spain. Last time she was over I was in hosp with infection and as she’s a primary school teacher and just come over on a plane we thought better not to visit. Hoping to see her at Christmas in my ‘good’ week.

Temp, my first in the ear thermometer (Braun 5) consistently read higher than nhs. I don’t know if it was faulty but got money back and bought Braun 3. Much better, I put mine in and slightly press it upwards. My two ears are usually different and left ear (paralysed side) can go from 38.3 to 37.0 in 10mins so unless my right ear is high I generally ignore that. As long as you’re consistent, really you’re measuring the difference between your normal and going high. Our unit uses the forehead ones and again, my left side is often higher. I have to remind them to use my left side.

Ha, I never jumped my big old ex puissance horse to that level but I’ve got a great picture of me going over a jumps with about a foot+ of air between me and the saddle!

Good luck to everyone today. I’m trying the chemo bus for the first time today, for my flush. 10mins away instead of 45mins.



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Re: October 2017 Chemo Starters

Very true....Christmas dinner may not happen if you did!! 🙄🤣🤣🤣
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Re: October 2017 Chemo Starters

Gluhwein I think is more or less the same as mulled wine. I get bottles of it from Aldi after having it in Brussels at a Xmas market. It's also where I got the idea of adding a shot of ameretto as they add shots of stuff to it. I would've had some this year, but as OH doesn't drink it would just be me and I've not really fancied alcohol plus I couldn't and probably shouldn't drink a whole bottle to myself especially with added ameretto 😳😳😳

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Re: October 2017 Chemo Starters

May have to try that, although I still may do mulled wine and just have a little!! Never heard of mulled gluhwein...what is that?

They use the digital thermometers at my hospital and told me to get one of those which I did! Glad your rash is starting to clear, wonder what caused it...I do think our bodies are starting to retaliate a little...👾👾👾☠️☠️☠️
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Re: October 2017 Chemo Starters

Karen also meant to say I take temp with oral thermometer 🤒 As that's what hospital gave me. I usually take mine in the morning before I get up as opening your mouth, talking and drinking stuff within 30 minutes of taking temp can affect the reading and the only chance I have of not having done those things is when I first wake up. 🙄