hope work goes well tomorrow, hubby has been through the gdpr stuff with work, such a massive subject, you will need to leave your chemo brain at home...xxx
daisy...fingers crossed for you love, sounds horrendous....
Think I may have overdone me walk today, had headphones on....ELO blasting in me ears.....had to sit down in the cemetery to recover....what a place to have a woozy episode! Xxx
Nettinoo the wig really suits you, glad the real hair is much more comfortable.
Implausible, I love your spirit. I think you are rocking the look, beard and all.😉
i am now rocking a Pre-eclampsia look, with swollen ankles and legs. I went for a walk in between rounds at todays competition and I think it looked more like a waddle.
Good evening all,
Daisydi I am stunned.
Deano don’t know what to say either!!!
Implausible great photos with your partner.
Nettienoo you look fantastic.
I have napped and walked again, more of the Worth Way ( my son came along this time).
I am definitely feeling much better.
I plan to visit my class this Wednesday.
Dose #5 is on May 16th.
Hugs to you all.
Hello xx not had much to report so not been on today. Most eventful thing was a bath that made me woozy but they generally do... just shopping, quick catch up with bestie who is even less chatty than me, bath and then hair wash which took a while with a sit down in between and then dinner. Took off my nail varnish but not sure I’ve got the stamina to put it back on so probably a job for tomorrow.
My next T is 13th and I was first with no delays so I guess me again? I feel much better but I do keep getting sleepy now. I’ve been good not looking at my phone in the night and trying to go straight back to sleep if I wake but I’m still getting more tired. Tomorrow I only have a half day (plus reflexology), then on Tuesday if people are well I’m going into work for the first time in ages, and to actually do some work - GDPR anybody? So I’ll see how I go with that.
Daisy I hope the drugs start to make you more comfortable soon, Nettie the wig looks great and Sarah the shave looks great! Lost slightly less hair in the shower today. Lump seems more noticeable today though 😕
Not sure how long I can stay awake for dinner seems to have knocked me out.
Implausible that look really suits you. You know best and it does look so much better than the wispy hair. Well done you for being so brave. As for my nether regions thank god I am not nearly as itchy but alas still swollen. Ive never see anything like it. The Dr wasnt convinced it was thrush as it didnt look right but the heated red swollen areas, i.e. armpits and delicate areas are so different to the little spots everywhere else. He said if he gave me a tablet for thrush that is really heavy on the liver which is already being put under stress so he is sure it is a reaction to one of the drugs. As it didnt happen until I was doing the injections I am putting it down to them but will speak to the unit on Tuesday. I am not going through this again but lets see what they say. I could barely walk yesterday and I am still having to take so many painkillers but I think/hope things are improving. My tongue is disgusting but I do also have that green mouthwash.
Sounds like everyone is improving now. Who's first for the second dose? Nettie your wig looks lovely. Going to get an ice lolly now. Love to everyone xxx
Haha Susie no such thing as TMI in here, we all know each others' deepest darkest secrets by now!
Daisy.... so the doc didn't think it was thrush at all? At least if it is an allergic reaction the antihistamines should kick in pretty quickly. How are you now? Any better?
Deano - yup T is pretty horrid isn't it. Must admit that in the last week the thought of just giving up has crossed my mind too. But I have been feeling a lot better the past couple of days (still nowhere near as good as I would have felt at this stage of a FEC cycle, but much better than I was), and so I reckon I can plough on. I am rather hoping though that my onco might be in touch once he hears I was in hospital (they said they would let him know), and when he calls, I plan to ask if there is any possibility of reducing the dose next time.
Seaside.... I love my fake fringe too but there is little chance of my hair growing through to match it
And talking of hair..... i did it, I braved the shave!
Me and my other half are now twins at least if I repurpose my wig as a beard
I much prefer it to the half hearted baby monkey hair I had, i feel like a cool supervillain
Love to all
The antihistamines worked a treat for
me with my rash on my neck, hopefully they will work for you too, as I wanted to rip my throat out.
Will catch up properly ladies as still in stoke n Trent
sirry to hear about your thrush my darlin. I have had an horrendous weak on T with severe oral thrush, blurred vision, hot flushing, itching, aches and pains I compared this to falling out a 30 foot window onto hard concrete I also fainted a few times as well.
Anyway I was given Flucanzole 50 mg for thrush for 7 days and levooaxin 500 mg tab for 10 days. My thrush went yesterday and I had a green mouthwash which helps after every meal. Today my aches have stopped but still feel weak around my joints.
Onc told me it takes a week to recover from T side effects which is about right. Also the stomach injections cause pain on joint with T and I finished mine yesterday.
im back today in the land of the living today and contemplated last week - that’s it no more T for me I’ve done which has upset my family But I’ll see in 2 weeks how I get in got MRI on 15th day before onc to se whether this lump has truly gone as I can’t feel it
T for me is the worst but you will get through this within a week you hopefully will feel different - bless you ❤️❤️❤️❤️💖
Daisydi, glad you've got some meds that will hopefully clear the rashes. It must be really uncomfortable for you. Hope the medics can find out the cause, T or WBC injections. I don't think I want T when the time comes☹. Take care xx
Daisy, how awful for you. It's even worse not being sure what's causing it. I had a terrible rash after my second lot of surgery, which turned out to be a reaction to the glue. Anti-histamine did the trick so I hope it works for you too.
Big hugs x
Rosina, thanks for the walking tips. I need to get more adventurous.
Nettie, you look lovely! Isn't it nice to feel a bit normal again? 😊
I'm getting so attached to my fake fringe, I'll be gutted if my new hair growth doesn't match up. Might have to carry on wearing it forever.
Implausible, you're impossible😂😂! That made me laugh. To be honest it's only since I've stopped chemo for a while that I'm beginning to feel anything like normal. After surgery and yet more chemo it'll definitely be a case of thank you, but no thank you. Plus it helps when Chris disappears for the weekend. Oh dear is that tmi?
Just back from out of hours GP service at the hospital. I dont have oncology cover just for sepsis! I have now got rashes all over the place under my boobs , chest , neck, armpits, lady bits very swollen but they think it is either a reaction to the T or maybe WBC injections. Have some antihistamines now so hoping they will work. Dont think I want any more T
Oooh Nettie the fancypants wig looks wonderful! Glad to hear it is more comfortable than a synthetic one. That will be handy as the weather gets warmer.
Susie.... sadly Iceland might be a bit far for my afternoon walk as for BC talk, I'm the same as you, I am happy to talk it up in here as you all know what I'm going through and it is useful to swap notes. But I'd rather my friends and family kept it to a minimum. I keep them informed as to my progress and how I am and stuff, but beyond that it is nice to just talk about normal things and forget about it for a bit.
Daisy.... how are you getting on?
And as for "making the most of an empty house", all I can say is that I hope my other half doesn't find this forum because I have been telling him confidently that nobody is up to any of that palaver and he is going to have to wait until summer 2020 at the soonest
Love you too Marlyn.😘
I finally got my real hair wig sorted yesterday and had a lesson in washing and blow drying it. It’s a lot cooler to wear and less itchy than the synthetic one although it feels a bit tight around my head. I’ve been assured it will loosen with washing and wearing. I just need to get back to wearing my contacts and I can feel like me again. Xx
Daisyd, hoping for a positive update regarding the thrush....not nice...
susie....Sooooo impressed you made use of the empty house! Really hoping I can " make use of an empty house" soon as at the moment I can't even begin to feel sexy in any way shape or form....you give me hope!!
rosina...I have ordered that book from Amazon, you have given me the kick up the bum I needed...it all makes perfect sense.....
well, I'm venturing out to the garden centre for a wee potter....first trip out proper......let's hope no one thinks iv been drinking??!!
I bloody love love you all.......xxxxx
Susie, my husband had a wonderful time yesterday so much so that he is still recovering this morning. 🤪 The Army won by the way. Xx
Rosina for walking Iceland, not the shop, is brilliant. No crowds, fresh clean air, so peaceful you can almost hear the quiet and all the views, waterfalls, glaciers, bird watching and loads of other stuff comes free. I love it.
Just caught up with all the chat, there's been loads since Friday! As Paul is on leave and Chris is away we're already getting into holiday mood. Hubby has done all the washing and ironing so the rest of the weekend is free. Had a good relaxing afternoon yesterday, let's just say we took advantage of an empty house ( saying no more), then we had a lovely meal out at a local village pub. In fact around here nearly all the decent pubs are in villages. We're gradually winding down on the BC chat. I even sent an email to my Mum and Brother bringing them up to date with everything and asking them, well more my Mum, not to ask about surgery date, explaining I may get late notification as I've told the surgeon we can take a last minute slot. Also pointed out that 5 months of continuous bc talk is enough for anyone. Didn't tell them, but chatting away with all of you about anything and everything, including bc, chemo, ops, etc isn't a problem. All the updates of T side effects is much appreciated, as they say fore warned is fore armed.
Daisydi sorry to hear about you yeast infection. It sounds awful, hope it gets sorted soon. And thanks to Pastamissus for the information regarding Fluconazol. Knowing you're a GP is really helpful.
Implausible brilliant art work photos from Bristol. We've lived here for 20 years and never been to the place. The closest we've got is Cribbs Causeway for retail therapy👜👠👢👞🛍.
Edinbird lovely photos of your park and headbands, they look great☺.
Rosina thanks for the information about the benefits of walking. I'd heard about the micro wotsit cells - sorry can't remember what they were called - but after walking from a carpark I use when I go to the hospital 4 times last week it certainly got easier as the week went by. Good practice for walking around Aix although that will be a big more leisurely. Talking of Aix, I've just bought a new phone, my other one was playing up, so I'll see what its like for photos, as well as my camera.
Marlyn you have to stay with us. You're still having treatment and we need your sense of humour. Totally with you on the drunken walk. I feel great about not having chemo for the next few weeks so I can't imagine how elated you must be feeling right now 😊😊😊
Nettienoo hope your husband enjoyed his day at Twickers🏉. Don't know what the final score was. Hubby wasn't supporting either team as such, but hoped the Navy didn't win.
Sorry I can't mention/respond to all of you, as I said at the start there's too much chat, not that I'm complaining. Long may it continue. So all I can do is say that you are ALL in my thoughts and I truly don't know what I would do without you.
Have a lovely day and enjoy the sunshine☀️☀️☀️, well it's shining here in Martock, Somerset, if a little cold. Take care xxxxxxx
I live in Crawley ( so I am London over spill and commuter zone suburbia). No I am not driving to get to a pretty spot. I started with my local park and then extended this to adding on a second park ( having lived here for 17 years I had never been 😬). This does involve walking through neighbourhoods, part of a golf club (look out for golfers 🤪).
I then had heard of the ‘Worth Way’ but had never walked it. A lot of people ( including myself) seem to think that you need to drive to it’s starting point but as we discovered yesterday you don’t . We used my google maps on my phone, looked at the root online and at one point asked - when we weren’t sure.
We have many foot/cycle paths around here that are short cuts and take you off the roads.
There is quite a network.
I also walk into town , Hospital, library and it is fun to try different approaches.
I am becoming more adventurous and don’t mind getting ‘lost’ as with the phone and google maps you are never lost.
The book ‘Healing Walks for Hard Times’ has lots of mental activities to try out and I use a variety of them some are as simple as counting breaths. The mental activities are there to switch off rubbish mental chatter.
I highly recommend the book, I now want to go on walking holidays and I am thinking of walking into work more regularly when I return.
The author refers to walking as a ‘practice’ as opposed to a good habit.
Off to walk to Tesco’s now, because I must bake those brownies.
Looks like you had a fab day out yesterday. Great pics! Pub food to boot. Yum.
Your post about walking resonated with me. I am so bored of the walking routes near my house and although there are many nice walks within driving distance, I too have felt unable to get in the car this last week.
Yesterday I braved a slightly longer walk, only to get rained on partway through. Still, it was nice to get out. I did feel the effects of my longer distance in my muscles by the time I got home though. What's that all about?
Might get hubby to drive somewhere different for a change of scenery today.
Hope you managed to get some sleep and that you can get the meds you need today.
Daisy I hope they get you fixed up good and quick and that you managed to sleep through the itchiness!
I think I would take pain over itchy any day of the week.
Rosina, while you are here, a question. After our conversation yesterday about walking I have been thinking how I can get more walking .... and specifically more *interesting* walking.... into my day.
I wanted to ask.... do you have all those lovely nature spots immediately near your house or are you driving to somewhere nice and then walking there?
Because i think that is my issue.... I often feel up for a walk but not up to driving. Since T kicked in my eyesight has been a tiny bit blurred and also I feel a little woozy/ not quite on this planet
The only time I have driven the car since a week and a half ago was to the polling station on Thurs, which was a 5 min drive and I made my 16yo come with me as i really didn't feel safe to drive alone. Not sure what he would have done if i passed out at the wheel, mind, but luckily I didn't
So consequently I am stuck with just walking round the block from my house. And it really isn't inspiring scenery!
Any ideas for how I can make my walks through Swindon suburbia more enticing?
All that said, today I think I am finally good to drive. My eyesight has recovered enough that I have been able to read books before bed the last couple of nights (really missed reading!), and that spaced out woozy feeling seems to have finally cleared.
So i am going to drive up to the local country park later and have a nice wander around, make the most of my freedom.
hope you had a reasonable night.
Get your self sorted today and let us know how you get on.
Thanks all I have just got my call back from 111 but I cant face going in now so going to the hospital in the morning. I am going to bed and hopefully will get some sleep. Night night, scratch, night night, scratch ..... When I spoke to my onco team this morning they advised to call 111. Not a lot of help!
The fluconazole you can buy is a single tablet of 150mg. For chemo patients, what you need is a week of 50mg tablet daily. Contact your chemo helpline as Sandra has said. (I'm a GP)
Thanks Sandra that’s the pill I was talking about... I wouldn’t want to take anything as a pill without checking with medics first (hence my aversion to Imodium!) but I think you need the pill since it’s not gonna get touched by a pessary.
Hope 111 has helped xx
Girls Ive got the worst yeast infection ever in every orifice even my armpits. Got some canesten cream. Any other recommendations?
Daisydi, you must contact a chemo unit immediately. Please do not use yogurt because it could be worst and things like neem oil or tea tree should not be applied in chemo patients because there is no effective research.
You have a combi canesten, that includes a internal pessary or cream and an external cream.
Now, this is the important bit: in chemo patients it is advisable to use immediately a pill called Fluconazole and it can be bought even without prescription, but if you use the internal pessary or internal cream you cannot use the Fluconazole! However, Fluconazole can be used with Canesten external cream.
Normally, a call would suffice, in case you have no doubts, but if they feel that it is well spread, they must see you because it can be very dangerous for a chemo patient.
You should have a chemo unit available during the weekend, call them, tell them about the symptoms, what type of canesten are you using and mention the Fluconazole.
I am really sorry about this, honey, you must be in a terrible state.
all the art is amazing.
The hummingbird is my favourite though.
Full of energy.
Almost finished my book on walking.
It just reinforces everything.
Walking is even advised for those who have arthritic joints.
I didn’t know the bit about the mitochondria ( the cells power stations either) . I actually took walking for granted!!
Rosina, this bit is really interesting:
"The other science bit that I like is the fact that when we make energy demands on our cells the little power stations ( the mitochondria) have to meet that demand ( otherwise they shut down) so the more the demand the more energy and the less the demand the more fatigued we feel."
I have always known this to an extent.... that the more I lounge about the worse I feel, and if I make myself go out for a walk even if I don't really want to, it will always make me feel better.
But I didn't know the science behind it. That is interesting. Thanks for sharing.
Oh and Dr James - I saw the rock choir video you shared on Facebook. You all looked and sounded great!! Hope you had fun with it.
Well I have had a good day today, I feel like I'm mainly back to feeling like me again. Still a little weak and wobbly legged, and I have to take breathers in the middle of long walks, especially if they are remotely uphill, but I'm definitely getting there.
T - you cant keep a good woman down!!
So I've been all over Bristol. Starting at the graffiti jam. While my other half painted and chatted for a couple of hours I settled in at the pub in the garden with the sound system behind me and the sun shining, a pint (of orange juice and lemonade ), some yummy food and a good book. It was rather nice!
After lunch we walked to the top of Windmill Hill (which half killed me ) to see a recently completed wall that I was keen to see in person. Because it is amazing!
And then we went to a different part of the city where there was a pop up gallery with a really cool exhibition on. They paired 50 scientists with 50 artists and each artist produced a piece inspired by the scientist's line of work or research. My 2 favourite things together. The lady at the gallery said I might even be able to take part next year if they do a similar thing again. I would love that.
And then we found some other cool walls..... love how this one spills over onto the pavement:
And then I very excitedly found the remains of a monster sticker I put on a pole in a park 8 years ago he used to have a googly eye but that is long gone
And then it was home time.
First time I have got my 10k steps in over a week.
Feel so much better for it.
Sleep time now
Daisydi, You poor darling, you must feel very uncomfortable. Did you speak to NHS helpline? I think you need advice from a doc on what to use as you don’t want to irritate it more. Xx
Rosina you are right I ended up in bed with the electric blanket on this afternoon! Felt my eyes going and it was chilly.
Daisy I don’t know if you should self medicate with the tablet you can take but that would get rid of everything everywhere in conjunction with cream... can you ring the helpline and ask about it? If you have the symptoms all over the place it must be clear that’s what it is so surely they wouldn’t want you to go in for it? I waited with mine until I went in for my chemo but I was only afflicted in the traditional way and it wasn’t too troublesome.
So I have nothing else to report... about to have a curry. Hope I get tired later after my nap!
Not been on antibiotics but obviously chemo has found my weakness. Have read about yoghurt etc. but we cant take probiotics. Feel rubbish. Think I may dial 111 as my onco department cant seem to help
Oh Daisy that sounds horrid
I can't remember, have you been on antibiotics? As they always tend to make me thrushy. Ugh.
I could feel it "threatening" when I got home from hospital this week after all the antibiotic drips they put me on, but so far it hasn't gone all out. Touch wood.
As for treatment, Canesten cream is all I have ever used. But maybe worth asking your local pharmacist if they have anything else you could use aswell?
I did a google search:
It lists some home remedies that you could try.
I have no personal experience of any of them.
I would guess that the yogurt suggestion would be a good one to try.
Hope it clears up soon.
Oh daisy, I'm so sorry to read this....is it a weakness that chemo has latched onto ? The only thing I can think of is live yoghurt slathered around your nether regions.......I do hope it clears.....
my weakness is my vertigo which chemo made a beeline for, been stumbling all over the place today anyone would think I'd been boozing! Xxx
Edinbird, just keep doing your bits of walking.
It is better than nothing. Seriously this book that I am reading ‘ Healing Walks for Hard Times’ says even as little as 5 minutes has benefits.
Each chapter is backed by an extensive bibliography of papers from science journals ( medicine, psychology) so it is all evidence based and not anecdotal .
The author also stresses this thing called ‘cognitive over-ride’ where basically an individual engages with an activity ( even when they don’t feel up to it ) because they know that they will feel better afterwards. It is true.
The other science bit that I like is the fact that when we make energy demands on our cells the little power stations ( the mitochondria) have to meet that demand ( otherwise they shut down) so the more the demand the more energy and the less the demand the more fatigued we feel.
This encourages me to walk on most days.
I also take afternoon naps when needed.
The fun part is I am discovering parts of my local area that I knew nothing about.
I also have the goal of the ‘Thames Mighty Hike ‘ that I am determined to complete.
Implausible have a lovely time with your graffiti artist.
Seasidesar I like cats, they have minds of their own.
Girls Ive got the worst yeast infection ever in every orifice even my armpits. Got some canesten cream. Any other recommendations?
Rosina please tell me your secret! Just walked and my legs still need to be physically told to go one in front of the other!
Had a wander to the pharmacy (where the woman at the till sneezed before giving me my husbands painkillers 😝) and then round the park and back to Morrisons where I met husband to get a few things. Now I’m sat down my legs are ok but they just have no go when I want to get anywhere. Cold ears too.
Grey skies but here are a few pics of the park and the burn
Well, afternoon now
Hope everyone is well and that the weather is picking up where you are
MBJ I can imagine worse songs to get stuck in the old noggin. But still annoying I'm sure. My favourite ear worm dislodging tune is c'est la vie by B*witched. Always seems to work. You are welcome to try it
Nettie, sorry your glass of wine wasn't nice. Although to be honest I've always thought wine tastes mank! I am a real lightweight with alcohol, don't like to be able to taste it. So I'm all about bucks fizz, alcopops and cocktails and maybe a decent cider that actually tastes of apples.
Seaside..... that is a really good description, that everything gets diluted. I was struggling to explain the sensation. Like everything tastes both bland but also a little unpleasant.
Your cat is very naughty!!! do they not know you are poorly??
As for me, I am on my way to Bristol for a paint jam (kind of a small graffiti writer meet up) . Still not feeling 100 percent but my other half is doing all the driving and all I have to do is sit on the grass in the sunshine (well, in the shade) and watch people paint and chat to our friends. Doesn't sound overly taxing and Jay says as soon as I start to look tired he will bring me home again.
I'm glad I'm getting out of the house to do *something* as literally all my best pals are at an event in London today that I am totally gutted to be missing, so this is taking my mind off that.
I am being sent loads of photos and messages from London though so that's nice.
Take care all
Morning from a sunny (but cold) MK,
Carnage in my kitchen this morning as the cat decided to treat me to a furball and a poo on the floor. Delightful! Strangely, I then went on to have the most enormous breakfast. Must not stand on scales for a good couple of days until I've done some steps to work that one off.
Have fun at your gig, MBJ. I love Don't stop me now, it's such a feel good song. My choir emailed about gigs last night (scary as I've only been once!) But most of the songs are West End ballads. Maybe I need to find myself a rock choir too 🤔
Nettie, you poor thing. Horlicks instead of wine. Must admit, I would have been with you on that one. My tastebuds seem to be diluting everything at the moment. It's driving me mad.
Hope the rest of you lovely ladies are OK today.
Morning lovelies, it’s started out sunny here in Stafford but probably not going to last. I’m off to Birmingham to the wig shop (again) to have my lesson in caring for my real hair wig. I need the fringe sorting a bit more too. My husband was up with the lark, whistling around the house and has now left for Twickenham with his friends to watch the Army v Navy rugby (and drink a few beers no doubt).
I am looking forward to 3 days of feeling okayish apart from ear before blood test Tuesday and chemo Wednesday.
Have a good bank holiday weekend my darlings. Xxx
Ps some ex colleagues from the court service came round yesterday evening and I had my first glass of wine since January. It tasted awful!!! Ended up going and making a horlicks instead. My life is so rock and roll these days! 😂😂😂. X
ood Morning Rosina
What a lovely read that was. Every time I woke up last night and it's still there now I have the song Don't stop me now going on in my head. I have been listening to my Rock choir downloads too much to try and catch up. I even started to sing Oranges and Lemons to try to blank it out .Singing it today in our gig so I hope then it will disappear from my brain for a bit.
I had better get up I can hear my dog demanding food. Hubby has gone for a paper he must have gone by car.
Whose bright idea was it to go out for a walk?
It was dry and sunny when I left the house!
Never mind. I got to just under 7k steps even with turning back early because of the heavens opening.
That is the best I've managed in over a week.
PS MBJ I love the idea of you wandering around the shops doing your best Sinead O'Connor impression thinking "I'm sure I've forgotten something......"
PPS Rosina that cyanotype print is gorgeous! I've always wanted to have a go at one of those.