I’ve had nausea on tax but no pains. Also the steriods don’t affect my sleep or my energy levels - never get the urge to do loads of house work after taking them:smileywink:xx
Hello Beamers, Great post PaulS, thanks for passing on your onc’s useful words and your take on them. It’s motivated me to head out for a walk - I read that 20 minutes brisk walk each day significantly reduced risk of recurrence … it was in The Times I think. My (very chatty) onc said whatever you do on chemo, stay active - best way to fight fatigue, keep weight stable and improve mental wellbeing. Also to continue post-treatments. Wise words. He was also interesting on the subject of preventative surgery; opinions sure do differ on that one.
Also, that petition is an important one - needs lost more signatures to warrant Commons debate, so needs to be circulated on your networks. It could be us needing those drugs after 2016.
Am still really under the weather, nauseous, dizzy and weedy. Think that last cycle’s liver issues have taken their toll, but spirits good and am making blackcurrant jam, as I’m craving sugar all the time! Fingers crossed that I’ll pick up soon. Love to all of you - all the gals and cocktail girls especially. Hope weekend nice, and next week is a good’un. TTFN, Anna 
and Den, my heart goes out to you coping with poorly hubby. sending you all the positive beams in the world, hope you are not getting too exhausted Anna
Just in case you need that e petition link:
epetitions.direct.gov.uk/petitions/64432
I’ll stop with the verbal diarrhoea now!! Love A.
HI girls…back again x been catching up on posts…Sam you made me laugh about the lampshade! I totally get it! Hee hee and Anna I am imagining you dressed as my favourite MJ nice long fingerless gloves…rather eighties wouldn’t you say?
Well what an experience I had in hospital. Went to A&E. Went through all the assessments. Was put to wait with everyone and suddenly told I needed to be segregated and was put in the assessment part with a tiny curtain wrapped round me for about 1 and half hours!!! I love the NHS and thoroughly support it but actually had a really negative experience. Was really surprised to find my white bloods good. However there’s a non specific inflammatory score which was over 200. They phoned my onc and she recommended I stayed in over night to get IV antibiotics and be monitored for inflammation score to drop. All that was fine. However I was put on a ward then moved to another. My goodness it was the unhealthiest place I’ve ever been! There was no joined up thinking or passing on of information. I was put next to a poor lady with severe dementia who was constantly coming to my bed and lots of hygienic things…up all night. Our beds were round a corner away from the nurses. I’ve had brilliant nurses on my surgical ward but on this one I was left holding my drip , had to chase up doing my urine sample( it stayed on my table) nobody checked me all night ( the point of me being there) and nobody knew if I’d had my antibiotics for the day ( they kept asking me but actually it was their job to record it) it took me 7 hours to get out with my pack of antibiotics. The ward was boiling, no Windows, and a lady next to me was coughing and spluttering constantly. I had low immunity and just wanted to get out!!! Next time if necessary I’m just going to GP to get antibiotics unless I have a fever. Anyway enough moaning… day 10 post tax…skin in between fingers a bit red and dry…antibiotics making me have bad stomach…codeine made me really constipated…What fun!! Felt absolute elation to be home and really positive. I feel less toxic on tax but my body takes so much motivating to do simple things!!! So for next time I will get some strong pthainkillers ( SAMPS do you know what’s best…tramadol or tamazepam ) to take for a few days if necessary. Will also ask for steroid tail… as soon as stopped steroids seemed to crash with the swollen glands. Aches improved so soon when injections stopped. Got a nice big spot on my chin and periods stopped now!!! SAMPS sorry to hear you had a reaction! Scary but my real life friend who came with me had that too although I think is supposed to be quite uncommon. Den I hope you are managing love xxxx back later xxxxx
Ooh Anna you reminded me. The only food that’s doing it for me is anything sweet? Not chips or fats but things like honey and maple syrup. Everything else tastes of nothing. Boo hoo! I love my food and now I have no comforts!!!
Phew glad you’re ok Rachael! And gobsmacked you’re ok after that aswell, it’s sad but I’m not surprised about your treatment, hearing it more and more lately, and it’s bloody disgusting and not acceptable, makes me so angry, grrrrrr!! Bet you felt like kissing your floor when you got home lol!!
Tramadol is very similar to codeine/ co-codamol, same side effects with bowels sadly, and I take temazepam to help me sleep, not for pain relief. So it’s a toss up really, I’m taking co-codamol with 3 senokot at night and 3 in the morning, works for me, I’ve been on codeine for 14 months on and off (running injury),tried everything natural, herbal and medical for the bowels, senokot it is!!
Glad your not to bad though, I’m ok, but deffo different to FEC eh!! Good to have you back!! Mums putting the Xmas tree up downstairs, I’m not looking, deep breathing time, I’ll move it all when she goes home on Monday ?, love her lol xxx Sam
Thanks SAMPS for missing me! Thanks for the info…codeine it is along with senekot great idea…I’ve told daughter we’ll put Xmas tree up to.morrow and watch a movie…really early but you got to grab the energy when you can!!! Next chemo on 26th November so I know I will be out of it for a bit. I feel guilty being negative about hospitals but three ladies and I on the ward all ended up having a real laugh about it all to cheer ourselves up. We all nearly discharged ourselves that night. A lovely young woman with low immunity due to sickle cell got her coat on and went outside for a break. She said she hadn’t slept for 18 nights! They moved the lady round the corner eventually. Actually it was awful and I’m not really a complainer. No fault of her own but the dementia patient actually urinated on the floor at 3am and it streamed under my bed. I had to get up and get a nurse otherwise the lady would have been left in wet clothes and I could have trodden in it! Just felt so vulnerable to bloody germs! Rant over. Feel a bit queasy today but think it may be the antibiotics. Walked daughter to school and then did first round of walking in park in the rain. Took it easy and slowly. Take care everyone xxxxxx
Anna, I’ve signed the petition, but it’s disappointing and lacking information about the facts. I suspect a differently written one with background and more substance will spread better. Worth keeping an eye out I guess.
Rachael, you should get a feedback survey from the hospital after your stay. Be specific and honest! It’s outrageous what happened to you. If you have the energy, let the PALS service at the hospital know.
In bed now after successful day In chemo unit. They are truly amazing.
And a poem I wrote at 2am after a cheeky bowl of crunchy nut cornflakes:
Dexamethasone
They say sure things are
Death and tax.
I’m sure, and also
Dex and snacks.
xx
Morning girls, Den I know I read thread on here where the lady couldn’t take codeine so she took 1000mg paracetamol and 400mg brufen, don’t know amount you’re on but maybe give doc a call xxx I’m rationing myself to 2 cocodamol x 3 a day, but I know by morning it’s time for more, twingy, nerve pains in legs and back, and around neck, not bad but that’s with the codeine, and I feel tired, but ok apart from that,
Get back on that phone and pester them Den, pain relief is the least they can sort out for you!!
Hope yesterday’s tax girls all ok, and all you sunbeams, Pam hope lumps ok, taste buds gone so cornflakes it is, lots of love to you all xxx Sam
Morning beams.
Yesterday’s chemo went well, a bit of retail therapy afterwards then crashed in front of the telly. Feeling quite well this morning.
Youngest is running a temperature. Fingers X’d I done get it.
I’ve got the community nurse coming out tomorrow to show me how to do the injections myself so I don’t have to wait in for them each day. Was told by a lady the first set lot of injections is the hardest due to us still having some of the FEC in our bodies still. But if it continues u can get the pre made ones which sometimes suit ppl better.
Have a good day ladies. Cx
Hello busy Beams, lots of posts, and clearly it’s not been going smoothly for some of us. Am really sorry to hear that and sending under-the-weather Beams my love and positive vibes.
Rachael, you were missed! glad you are back in one piece, after such a ghastly experience… home sweet home is way better than all that germy, frightening and truly nasty stuff on the ward.
Tax sounds like a real handful gals - the steroids, the pain, the SEs … I’m so sorry to hear that it is taking a bit of getting used to, but we are all powering through and putting up with the sh** and crossing off the treatments.
Sam-am impressed the tree is up, and all done up to Mamma’s taste(!) I’ve done a few orders on Internet, but am hoping that the elves will arrive to take over the shopping duties.
Re pain relief - I can’t take codeine either; makes me hallucinate and vom. Post surgery I went straight from the morphine pump to ibruprofen (X 4 hourly) and paracetamol (X 6 hourly). It does actually work for quite considerable pain, but you need to be rigorous about the timings and staggering the doses in order to have continuous cover. Also take omeprazole or lansoprazole to protect stomach lining from the ibruprofen.
Dear god it’s raining again, just when I feel well enough to get out and about, it never fecking stops raining…Am dreaming about when this is all over, and starting to believe that it will happen. Lots of love, keep the poetry coming Peegee, love Anna
Morning, I’m going to venture out to do some Christmas shopping today - feeling good and want to make the most of it . I’d love to put my Christmas decs up - I love all the lights and sparkle maybe have to work on my hubby ?. I can’t stop eating quality streets at the moment - they always remind me of Christmas. Going out for dinner later - feels good to be doing normal things again instead of hiding in bed like last weekend. Sending hugs to all having a rubbish time - take care xx
Quality Street, great idea!! Nice one Nutty.
I had a surprisingly good night considering my 16mg Dex and Tax170 yesterday. Slept over 5 hours, then another 2.
No nausea so far, and feeling tired but fine.
Just caught up on Downton (such nonsense), and fridge full. 3yo is at his dad’s.
Sofa, blanket, etc all in place.
All good, but kind of feel like I’m sitting around waiting for side effects to start. Silly.
xx
These companies collect yew hedge clippings to make chemotherapy drugs. They pay too. Got yew? Could be good for you!
Yew! Who knew!
The breast pillows comes from Macmillan they are normally given to u at time of surgery u can also buy them from your well being Center. They’re made by the WI. It’s a small V shape which can sit under your arm.
Hope that helps Pam.
Hey Paul 
The Maggie center at Churchill oxford? That’s where I have my Chemo! You mind me asking where you are ? Xx
Hope you are all well, I’ve been feeling so tired n have been crappy at logging in 
xxx
Maggie’s in Edinburgh. Bicarbonate for gargling is great- dissolve one heaped teaspoon in pint of warm water and gargle four times a day. Today I bought hair fibres and spray as feel I have some bald patches and setting my husband has just done it for me. Brilliant! Covers them completely. Got it in Boots and will now get online as much cheaper. Sorry so many of you are struggling with SEs - hope they pass soon. I now have nearly all my Christmas presents and have wrapped them, so feeling very organised. Heading for couch now as knackered. P xx
HI everyone x Thanks Peegee I was looking forward to the survey but the nurses said it wouldn’t load on their computer! Den and Sam I found aching neck and glands really strong on tax . Got me worried hence hospital but will ask onc if this is a known tax thing. I suspect it is. Maybe I won’t worry next time. Still got slight head cold two weeks on. Bad stomach but think it’s the antibiotics. Watching Strictly and Xfactor…getting a bit stir crazy!! Sam…poor you on the cornflakes…the food thing is a bit stressful because I don’t fancy anything. Love my food! Think my taste is improving a bit day 11 today xxxxxxx Thanks Anna hope the elves come and help you x
Morning Sunbeams, September seems so far away now doesn’t it!
Hope your youngest is ok Char and you don’t end up with it, injections are not to bad, I’ve had them all the way through for first 5 days, no chance of the easy admin ones for me though, the nurse laughed when I asked, and I have to say the quality is pretty poor of mine, several times the needle leaked and syringe driver bit got stuck, very cheap n cheerful, but simple enough to work out, last one this morning till tax 2, ?,
Hope you’re hubby, heating and hash are all ok Den, thinking of you lots xx and pain is not to bad!!
My lounge looks lovely Anna, proper grotto lol, my husband will be so impressed when he gets back, not lol, don’t care!! I’m doing it my way this year, perks of illness are rare so I’m riding with it ?, I’m on 60mg of lansoprazole a day at moment, can feel the indigestion just being kept at bay!!
PaulS so glad the fibres are helpful, technology is great sometimes eh! Have to say it’s weird how my skin has never been better, ironic!
Glad your ok nutty and enjoyed you’re meal, and lovely poetry Peegee, keep it coming!!
Wondered where you’d been Lou, I feel you on the tired thing, I’m ok but effort is required for most things lol, lovely day out yesterday, managed to stay up till 11!! Pyjama day today!!
I’m day 6 of first tax, it’s ok, nail bed area is sore to touch, and just weird random pains sort of twinge around legs, neck and throat, Rachael I read that’s quite common, so I’m keeping dosed up because I can feel it when the codeine wheres off, but it’s still ok, for now, everything crossed!! The taste buds are off, spose I should think of it as a break from eating everything in sight on FEC , oh those were the days ??,
Lots of love to you all, chemo brain deffo worse so I have no idea if any of this will make sense, and I think it’s quite long hee hee, have a SE free day if poss, big hugs xxx Sam