dose #5 is Thursday 23rd of May ( assuming blood test is ok on Monday).
Apologies if I bored people to death re. My eating habits but the worry of developing lymphodema in my right arm ( I am right handed) keeps me on the straight and narrow and again the biggest risk factor seems to be piling on the pounds. I don’t want to ever have to wear a compression sleeve!!!!
Edinbird , glad you are home.
Podcasts are great for distracting yourself especially when tired, lots to choose from. The ‘Calm App’ also does ‘sleep stories’ , I haven’t listened to any though. I prefer Women’s Hour, The Life Scientific, The Infinite Monkey Cage , The Now Show and The News Quiz.
Marlyn your story is bonkers but funny.
Art therapy was all chat today ( no art) but I feel that I needed to take stock of where I am at.
Mum says one thing and then does the complete opposite. I offered to drive her back into town to go into specsavers (to pay for these glasses she has bought ) and she seems to have legged it.
H1 has escaped to London.
They are both excellent candidates for me to put all my meditation practice into action 🤪 i.e develop awareness of how irritating they can be, then breath and smile 😊
I’m home! A week of antibiotics although no particular infection found as yet. Just feel tired now.
The weather is lovely that’s the annoying thing but I think I’m better in the cool whilst I’m still worrying about my temperature.
All I want is dates! And news and updates. I wish I knew what was happening to me when. I’m just stuck idling whilst I wait and I’m no good at that. I want a timetable and to be able to plan. Let’s all swap shall we?!
Probably fall asleep for a bit before dinner 😴
Sorry to read some of you are having rough days. Edinbird I hope you are home or will be soon.
I am sure you must have been really fed up Marlyn it would be bad enough anyway without all that messing about.
Deano I love your poem, I am having a cwtch under a blanket watching TV I must remember I need to rest as well as rushing about with Rock Choir, slimming world, going out for meals and shopping. Recharge of my batteries needed as we are going to a 70 birthday party tomorrow night.
Hope you will all have a restful afternoon. Weather here is colder and ☁️.
It’s been a little drizzly here in Stafford, not much sun at all today.
Sonia I am totally with you on not getting too much info and dates up front when I’m mid treatment. I find it much easier to cope with stuff on a daily basis. I’ve been on Prozac since the middle of January (only the smallest dosage) but I know I would not have coped with any of this if I hadn’t, especially those terrifying first few weeks. I know it won’t be for ever. Sometimes you just got to take what’s on offer to get you through. I hate taking any meds unless I’m in dire need usually but chemo is a different kettle of fish.
Edinbird, I hope you get home soon and continue to improve. Keep an eye on things though eh? We all have poop days when we have nothing positive to report and they are just as important as the good days to hear about. That’s what we are about isn’t it, here for each other through everything.
Marlyn, how’s you temp? You might have said and I missed it.
Love you all. Everyone of you in my thoughts. Deano let us know how you got on if you are up to it please. Xx
Afternoon all,there is never a dull moment on this thread is there? Hope you are feeling better Marlyn and Seaside. Sonia and Sarah hope your bad days are not too bad. Edinbird hope they have now let you out. Have a rest and look after yourself for a change. Susie its very miserable and dull in Norfolk too. Drizzling and depressing! Have been to hospital for bloods so will wait and see if its all go for Monday. Really really not looking forward to it. Trixielady hope your day isnt too bad and Deano hope all goes well today. Rosina when is your number 5? Got to take these pesky dogs out now in the drizzle and cold. I actually went to a supermarket today for the first time in ages. Usually do it online. Quite enjoyed browsing and I got some vegan mayonnaise which I am really pleased about as I miss a bit of wet stuff on my salads. Speak to you all later. xxxx
Oh dear what a terrible time some of you are having at the moment☹.
Edinbird I hope you escape soon and get a chance to rest and recover over the weekend. Don't feel bad about talking about your rubbish day, that's what we're here for, to listen. By the way how come you've got the sunshine☀️, we could do with some of it down here in a rather cool and cloudy Somerset🌫🌫. Oh I see Devon have got the sunshine too, come on girls share it around a bit more, please.
Marlyn sorry you had such a 💩 day yesterday and yet you still manage to let your wicked sense of humour shine through🤣. It's funny, until a few years ago I would happily go topless on the beach, not in the UK though, it's too cold, but in your situation I'd be mortified. Here's me thinking rads were just a case of lay there and think of England then pick up your dignity on the way out.
On the helpful/unhelpful sons and friends perhaps we should swap. I often get reports on how kind and helpful Chris is from his friends' mothers.
As for me I had a call from the hospital regarding my upcoming surgery and final pre-op chat. When she told me she had a date for me I had to stop her in her tracks and explain I didn't want to know the date just yet. She probably thinks I'm mad or crazy. Anyway I'm having all the pre- op talk next Friday so I'm going to have to be brave and find out the date then. I simply don't want to know just yet as otherwise I'll simply dwell on it. Stupid or what!? I'm trying not to stress about it, but I started to take my anxiety meds the other day, all be it, just one not two tablets a day, just so that I can keep my nerves under some kind of control. Eeeeeeeek!😭.
Anyway hope all of you that have had a 💩 time of it recently soon get sorted and feel better. Take care all of you. Love you to bits❤❤❤❤❤❤
Apologies if I have already posted this? And how do I get it to post the right way round???? Arrrrggg!!!!
Hi Hun sorry your having it bad at the moment Edinbird, can't believe you're in hospital fingers crossed they hurry up and get you sorted, I seem to have on ok day and one bloody rotten one, aches and pains all over today trying to relax but can't get comfy xxx big hug, I was lucky i went through the menopause in my mid thirties but have had a couple of hot flushes due to the chemo xx
Thinking about you all and hoping once treatment is over we can look forward xx
Edinbird...everything crossed you will soon be home, jimjams and your own bed with proper meds in place is just the prescription you need.....let us know when your home? Xxx
Waiting on the black hole that is the pharmacy to get some antibiotics. Everything is back clear right now but they’ll grow the cultures over the weekend (some people have fun jobs eh?) and make sure I’m on the right treatment. So I can go home soon. A bit concerned about still being so sweaty and hot on and off, maybe it’s the weather and maybe the menopause is trying to kick my ass. Right now I just want food I’m starving and there’s no sign whatsoever.
I hope everyone else is managing to rest or get outdoors. Sat here looking at lovely weather and blue skies... makes things more bearable.
I feel bad just coming on and saying how rubbish my day has been. Thank you for caring so much 🤗😊🌸💕
Morning all you lovely ladies,
I probably slept for about 6 hours between 8pm and 8am. So lots of wakefulness inbetween but at least hubby did the decent thing and camped out in the spare room. I'm going to my first choir gig this afternoon and then treating myself to a take away pizza so I'm in for a better day than yesterday already.
So sorry to hear many of you are suffering right now.
Edinbird I hope you're not in there for too long and that they treat you well while you're there. Have they worked out what's wrong?
Deano good luck for today and thank you for sharing the lovely poem. Very wise words.
Sarah I hope you get through this rubbish part OK. Rest lots and get those boys to bring you some drinks & food when they finally surface.
Sonia it sounds like you're all organised to get through this weekend. Take it easy.
Marlyn I'm so sorry you had such a rough day yesterday. Who would have thought rads could turn out to be such a barrying pain? Your pornstar analogy did make me laugh though! I hope it all gets sorted next time for you.
To all the rest of you beautiful ladies, thank you for all the kind words. It means a lot and keeps me going.
Hope today is kind to everyone.
Implausible, I know what you mean about teenagers 😂 helpful for a drink or two or maybe a sandwich when I ask, but that’s about it. I recommend getting a girl 😂😂much more Thoughtful.
Mum like you though better left on my own when I’m feeling 💩 crap*y
take care xx
Edinbird, what a pickle, you have every right to feel lazy, hope you manage some good quality kip, did you say you're in a room on your own? Keep us updated love...you know how we worry xx
implausable, sorry your facing your rough days, I do hope you can also be lazy and drape yourself on the furniture for a while. My rads fiasco yesterday! Honestly, you couldn't make it up. There I was, naked from the waist up, all laid out like some porn star waiting for the action cue....it was freezing cold, I had 5 people in the room moving me around, but the machine said no...my elbows were far too close to the bit that twirls around (why this couldn't have been double checked last Thursday I don't know) anyway...long story short I've to go in on Monday....apparently they have re-written my position, just hope to God it works as yesterday was just horrible....I hadn't realised what an exact science rads is.. xx
seaside, how you doing Hun! Seem like we both want to forget yesterday! Xx
sonia, oh I do hope your "drop" tomorrow isn't too yukky, isn't awful waiting for something crappy to happen? You home alone this weekend? Xx
To every single one of you, I love you, to infinity and way beyond the stars....I simply couldn't do any of this without you xxx
lovely poem Deano - Thank you 🙏
Rest, look after yourselves.
Self-care and self love is needed so that you can then give to others, this is not selfish it’s common sense.
I am "being looked after" about as well as you would expect by 2 virtually nocturnal teenage boys. They dont usually get up till about 2pm onwards and are pretty useless when they do
But to be honest when I feel rubbish I'd rather just be left alone.
I only see my other half at the weekend but I expect he will be helpful when he turns up tomorrow at some point. I have enough food to last me till then so everything is ticketyboo
Sounds like your lot are abandoning you too but at least that means they aren't there to make a mess
Implausible, your a day ahead of me,so I’m expecting my drop tomorrow, hope your being looked after xx
the weekend is all
planned kids have lifts everywhere and food in the fridge, as hubby is off to Dublin in a stag weekend, and eldest had gone back to uni for exams , great timing.
The oral thrush is back already, but they gave me stuff to take on Wednesday as they thought it would re appear, okay so far apart from that.
Edinbird glad your being looked after xx
hope Marilyn and Sar are feeling better today xx
the good news the sun is shining here 🌞
take care lovely ladies xx
Just read your update. Going back to sleep isn't lazy! It will do you the world of good. Have a try....
Ah no Edinbird!!! Not good news
At least if you had to choose between you failing your MOT and the car, this is the one that doesn't result in a huge garage bill! God bless the NHS!
Hope you managed to get some sleep and that you will soon be on your way home x
Please keep us all updated as we will worry...
Deano good to hear from you, and with wise words. Best of luck with #5. I also asked nicely for a reduction in dose this time around but my onco said no. Hopefully yours is kinder!
Seaside and Marlyn I hope you both have much better days today than yesterday!
And love to the rest of you from Swindonia where I am starting to feel proper rough. Right on time. Ugh.
Morning all xx
So I have my own room, bloods are fine, throat swab fine, paracetamol seems to have taken temperature down. Possibly something in my urine. Only needed one IV they gave me v early on so I’ve not been hooked up to anything. Chest X-ray this morning.
Just tired having not come up to the room until about 3am. Just had to fend off a nurse who wanted to give me my injection that I have in the evening...! Not going to even mention my heart pills they can wait until I get home. Feel less snotty but chest is a little raspy.
Who is getting treatment today? I really feel like I’ve lost the plot. Just sat here not wanting to look like a lazy so and so by going back to sleep... oh well at least I get a rest and I’m not being pumped full of things
Sorry to hear you may have failed your MOT☹🤒. At least the hospital seem to be looking after you. Hope you feel better soon. Take care ❤❤❤
Deano, lovely words. Good luck today 🍀then only 1 more to go 🎉🎉
Edinbird, I Hope your okay, and your bloods were okay and you managed to get some sleep.
Susie, I think many of us are looking forward to the break.
Hope everyone has a good day today 😘
Edinbird, I hope the blood test results help get you sorted rapidly sweetheart, even if it’s just to be able to moved somewhere to sleep for now. Time goes so slowly when you are being assessed early hours. Big hugs.
Deano best of luck for later today love. Reduction of FEC made a big difference to how things went for me last time. What are you on at the moment, T?
So I’m on the assessment ward again! Maybe I didn’t pass my MOT...
High temperature and cold symptoms need checking out so hooked up to a drip right now. They were v quick in getting me assessed on the phone and in the ward, blood was shooting out of me! Doctor was nice and just got on with it. Hope they tell me my bloods stuff soon and get me moved somewhere or not so I know whether to sleep or not. As my last admission I don’t feel that bad! Just feel like I have a cold 🤧
Lovely to hear from you. The words are brilliant and sum up our new lives exactly. All the best for tomorrow. Only one more session after that, then like me, you can have a little break. You will feel normal for a while, it's great☺. Take care, Susie xx
I saw this and thought I would share I’ve got my 5 th treatment tomorrow and fingers crossed asked for a reduction given how bad I was last time - speak later everyone and take care xxx
Well that was a long day that I do not want to repeat. The pharmacy were short staffed so the drugs were super late and then the cold cap was on way too long and very uncomfortable. Was at the hospital from 10am to 4pm. Not a happy bunny! Off to bed now and hoping I get some more sleep than I did last night.
Goodnight you lovely ladies.
The car passed 😁
I kinda passed 😁
Getting slightly sore knees and my throat is a tad tickly, still a bit snotty. Only exercise was the walk from and to the garage.
Went and bought dog food and sat on the roof again in the sun bestie has such an amazing sun trap. Lots of cream on. So nice to rest your tired and aching bones in the heat.
My worst problem is the massive bruise I have managed to obtain misjudging getting back off the roof and inside yesterday!! It’s pretty sore on the back of my thigh and looks like I have meningitis (don’t worry I don’t!). It’s slathered in arnica cream so just gotta be careful with it. I’m just a clumsy lump 😂
Got jacket spuds in the oven and I’ll get an early night I think. Getting so confused with everyone’s ongoing problems with what they are and aren’t taking now... this is all stuff I’ve not even bothered my brain with as it doesn’t apply to me and my awkward little triple negative bundle of fun. Hope everyone is feeling better now 🤗xxxx
Talking of my big sister (the one who was friends with Suggs). She has never been to visit me once in the 18 years I have lived in Swindon.
She has just announced she is visiting next Wednesday.
Which would be plenty of notice if I wasn't about to descend into my T fugue state (and maybe end up back in hospital as my onco seems so sure I will).
Last cycle I was pretty much completely out of action from late Friday to Wednesday inclusive....
So I have a few days to get the house "prissy sister visitor ready" from it's current "episode of Hoarders" state.... but in those few days I am likely to be very much not in the mood for a big spring clean!
I did try to put her off but she wasn't having any of it!
Blimey lots going on since I last checked in!!
Daisy first. I'm glad to hear that your itchy symptoms seem to be clearing up. Nothing worse than an itch!!!
Marlyn I'm super confused as to why your elbow "sticking out" stopped the rads? Did they explain? When do you get to try again? You have to be re-tattooed? Sounds like the whole palaver put a total stink on your day :/
Did the temp and BP only shoot up when you had the herceptin? Could it be a reaction? (Ah you already answered no to that theory further up thread) All very stressful for you glad they have let you go home!!!
Being in a hot hospital definitely doesn't help temp! When I was desperately trying to escape hospital the other week the room I was in was BOILING like a sauna. They would come in and check my temp and it was too high. Then I asked to go and stand in the much cooler corridor for 5 mins and they checked again and it had gone right down....
Sonia- believe it or not there was one new receptionist at the GP today who was all smiles and the usual one who is usually a right old grump was also super nice for once. The new woman must be a good role model they sorted me out the form in 2 seconds flat and said it will be done within a week.... that was easy!
MBJ recording with/for Madness!!! How exciting!! My big sister lived in Camden back in the 80s and often saw them in her local pub. She was quite friendly with Suggs. Got me some free records and promotional swag which I was super chuffed with when I was in my early teens....
Seaside a long stressy day for you too I also mentioned a theatre cap to my nurses the last time I cold capped as by that point I was near enough totally bald on top, but they didn't know what I was on about either. They just slapped the cold cap straight on and it was super uncomfortable.
Susie lovely flower photos, thank you!
Rosina you really are an inspiration. All I seem to crave throughout chemo is carbs and cheese. Cheese toasties. Macaroni cheese. Pizzas. Ritz biscuits with cheese. Cheese and onion sausage rolls. You get the picture!!! No wonder I'm piling it on!!! But nothing else tastes right or takes the edge off my mild but still ever present nausea..... oh and I start and end the day with fruit salad so that is better.
I am having to force myself to eat veg though which is most unlike me. I love my veggies usually!!!
Drinking plenty of water and v weak squash though so at least I am well hydrated.
Been avoiding feta and goats cheese though, I thought they were on the naughty list?
As for me I wanted to get a lot done today as if last cycle is anything to go by, tomorrow I will start to feel pretty Barry..
But I ended up not getting to sleep last night till gone 2am because I took my steroids too late, so had a long lie in. Then I got up and did housework till my son got up and he didn't manage that till 2pm!! Which didn't leave us time to do all I wanted to do in the afternoon before his 4pm jiu jitsu class. So our trip to the local tip got canned. We did manage to visit the GP, pick up a parcel from the sorting office and do a big supermarket shop though, so not too bad.
I'm now out on my daily walk. Not a long one today, 8k steps or so, as I am really starting to flag now.
Saw a cute goose family though:
Next step home and maybe start on a painting I have promised a friend . Or I might just go straight to bed and watch TV
Hope everyone is mainly ok x
Oh dear what a worrying day for so many of my lovelies. I do hope tomorrow is a better one. 🙏🏻. Xxx
That's a day I don't want to repeat! Just got home, they only let me go if I promised to call the helpline if I felt ill.....all I need is a good night sleep...in me own bed....so damn relieved I'm not staying in.....will check in with you beautiful ladies tomorrow......xxxx
catching up on posts.
Marlyn and Seasidesar hope the Hospital visits have sorted. Long day for you both 🥴
Edinbird and Trixielady so sorry to hear that you are not feeling well.
Implausible thanks for asking about the prescription card. I haven’t got one either but I do remember the bc nurse mentioning it re. Tamoxifen although now I am wondering whether it will be Tamoxifen or Anastrazole as I am sure I have been kicked through the menopause and out the other side 🤪 Nettinoo Thanks for telling us it’s a form filling task, I will get on to it.
SusieB thanks for the flower pics ( mock orange smells lovely).
I picked Leith Hill for our walk today ( thinking it is only a short one) H1 drove us there ( had never been before) it was beautiful but the ‘hill’ bit was a challenge and I really had to focus on my breathing , so much so I must have sounded like a cart horse snorting away .
Weight wise , apart from dark chocolate I am off chips and crisps.
Butter is peanut or almond, cheese has to be soft white ( feta, goats , sheep’s) olive oil.
I have been eating plenty of fruit ( went berserk for citrus) and veg. soups especially ( spinach and nutmeg was on tap after each chemotherapy dose.)
For sweet stuff it’s been dates and flame raisins and molasses. No white stuff.
No alcohol, plus walking so so far my weight has been stable.
Plenty of nuts and beans and up to 4 slices of whole grain bread.
No water retention or nail loss either.
Soya milk ( not cows milk).
I eat pasta and potatoes.
I don’t ever feel hungry or deprived.
I ate chicken at the pub when my brother came but I would say I am vegetarian most of the time as last time I had chicken was over a year ago.
I like salmon with scrambled eggs and will eat them when I get a craving for them.
Juncky food is definitely out though.
What a mixed bag of posts at the moment. I can't keep up!
MJB, recording a video for Madness, you lucky thing we love them.
Marlyn, hope things improve soon and you're not having some kind of reaction to the herceptin. Mind you, I think if I was in your situation my BP would be sky high too. All this stuff that's supposed to help us seems designed to make us worse. Someone somewhere must have some kind of warped sense of humour.
Edinbird and Trixielady, hope you're both feeling a bit brighter.
Implausible, I think doctors' receptionists are a breed apart. Be as unhelpful as possible and the job is yours.
Daisydi, glad to know you feel a bit more 'with it' today.
Sonia28, hope you enjoyed your lunch. My own diet will start next Monday. My body is going to accept salads and apples🍎🍏🍅 whether it likes it or not. They're just a couple of things I completely went off during chemo, but surely after 5 weeks I should be back to normal by now?
Hope everyone else I haven't spoken to today is ok. Take care xxxxx
Mjb, that's the puzzling thing....it been a pretty steady 36 ( something) throughout chemo....now it's 37.9 ( nurse just took it again) I'm defo staying here until At least 4 pm.... I'm putting it down to stress over rads this morning....absolutely no sleep last night and a pretty warm chemo unit....xxx
Seaside....sorry your having a time of it too....I've been here since 8am....iPad battery nearly out....oh the joys....hope we're both home soon...really want me jimjams....xx
personally I think it's the palaver of rads ( or no rads) this morning....plus zero sleep last night....I actually feel ok except for feeling knackered! Got appointment Tuesday with nurse to see about my high pressure....may need meds.....hey ho.....xxx
Thanks Daisy and Susie, I will make sure they let me continue for my last session. Not giving up after all this hard work! X
I am sorry I did not see your earlier post. Gosh I hope you will be better soon. Do they think it's a reaction to the Herceptin?
Seaside Sar, I cold capped using a blue theatre cap for my 3rd and 4th chemo sessions as my hair is extremely thin on top - standard practice - and recommended by cold cap company. Best the nurse brushes up on her knowledge.
Seaside get the nurse to ring the cold cap company for advice. She is wrong! This is what happened to my friend and she got on to Paxman but it was then too late as all her hair had fallen out.
Oh Marlyn, souns like you're having a right Barry day!
Mine isn't great either. Been here since 10am only to find my drugs weren't ready. Just got the Herceptin started and cold cap on at 1pm. I'm in for a long day. Also, the nurse reckons my hair is getting too thin on top so I may not be able to cold cap next time. I mentioned wearing a theatre cap but she hadn't heard of that before. Hopefully I'll have a different nurse next time.
Sending big hugs to all you lovely ladies.
Still here.....not only is my blood pressure not coming down my temp is now reading 37.9 !!! Wtf??? Iv been ok throughout chemo.....give me 4 weeks and look what happens.....hope to god I'm not staying in!!! Boo hoo xx
My sister used to be in the Rock Choir MBJ. She absolutely loved it until they changed their choir leader and the times and she just couldnt settle. Well my hair has survived another wash. It is still shedding but it is still there albeit a bit thinner. A memory just came up on Facebook and it was 6 years ago when I bought my campervan. I absolutely loved it but had to sell it when my mum developed dementia and we really couldnt go away and leave her and now I have car phobic dogs so wouldnt be able to do that again but at least I did it!
I am sorry you feel rubbish Trixi and Edinbird, I hope you both have a better day today. Living in Wales we all get free prescriptions and I don't think we realize how lucky we are sometimes. Although I do think that the majority of you have had better care during chemo than me, so maybe the prescription monies could be spent better in Wales who knows?
Off to Rock Choir tonight, don't know if I shared some really exciting news girls. But on Monday we are recording a video for the group MADNESS for their tour. They are playing in Wales in May exciting stuff hey.