Hi girls, just had a break to tell you all about Veronica's 3rd cycle today. She had an IV cannula, her usual and very painful Zoladex, FEC going in, when the C started she felt a strong pressure in her sinus and forehead.
She has her left arm a bit impaired due to the mastectomy and has to avoid pressure because it can lead to a lymphodema, they had to use it to draw blood and she has acgigantic bruise, her right arm is all bruised due to the IV, her right hand had collapsed veins so really painful, cannot sleep on her back because she cannot breathe and she started with sleep apnea because of the C.
Now, she is feeling so bad that she is terrified of being left alone, most of the times I cannot understand what she is saying, because she is mumbling a lot, I made her carrot soup and peanut butter cookies, trying to get her to eat something.
She falls a sleep for like 10 minutes and then everything starts again, twisting and turning, asking me what did she do wrong to have this, mumbling again... and it goes on.
This, since 2pm, after returning from the hospital.
I am so sad to see her like this, all the pain from the treatment, and then feeling like this.
Since February that she can hardly walk, she cannot do anything, sometimes it is hard just to get a glass of water.
She is afraid of being left alone, she says she cannot stand it, she needs loads of hugs and pampering.
I am so defeated today!
Now for the ladies speaking about hair. Mine, of course, is growing after I shaved it all, but is growing upwards, making me look like a crazy cockatiel.
And it doesn't go down!
OK, for a few laughts, V trying to eat a cookie, but she had to lie down, and her crazy dog made a beeline for the cookie, with me following her desperate to grab the dog or the cookie!
I’ve not heard that one Marlyn. I’ve had 3 lots of Herceptin with my T. Will ask the nurse next week xx
i started chemo in February. Just had 4th dose of 8. Haven’t been out much in public as paranoid about picking up germs but got tickets to London show next week (matinee). Don’t know whether I should go?
Dikat, after chemo I will be on herceptin for at least 9 months and the nurse told me it will slow growth down...so that's been playing on my mind....xxx
Hi everyone. It has been raining here most of the day but now it has stopped and the sun is out so I am making the most of it and have popped out for a little walk.
The photophobia I experienced in cycle 1 seems to have come back a little bit, so shades on!
Doing my best Beastie Boys impression
Daisydi I'm glad you got the steroids stuff sorted out. We have to keep them on their toes!
Sounds like you have had a busy day! I bought some different (but if I remember expensive!) brow enhancer stuff before starting chemo, but so far haven't needed to try it as my brows are still pretty present. I just use my normal brow pencil for now.
Seaside, glad to hear your first T sesh went well. It isn't supposed to be as aggressive on the hairloss front as FEC so hopefully the short cold cap duration won't have undone all your good work to date?
As for people not recognising you, when I went out for that night in Bristol a few weeks ago and wore my wig, at least 4 or 5 really close friends walked literally right past me to Jay, asked him how I was, and then nearly fainted when he was all "why don't you ask her? She's right there!" I think it was a combination of new hairstyle (which shouldn't have thrown them that much as I change my hair constantly anyway ) and the fact they are expecting me to be languishing at home on the sofa so nobody was expecting to see me.
I want a 10 week art course! Jealous!! Not sure about choir though. I would enjoy it but I don't know about the poor sods having to listen to my tone deaf wailing
Rosina first T down for you too. Hooray! And well done to H1 for behaving
Yup our place is same rule, neutrophils have to be 1.5 and up for a definite go ahead. They said they will consider going as low as 1.3 but only if other readings are healthy and you seem overall well. But no lower than that.
Edinbird I can't advise as all food still tastes pretty good to me. Too good! liquids have gone weird though, I'm having to stick to plain water (which is a bit off but manageable) because all my usual squashes taste gross.
Now that all the Easter chocolates and treats have been demolished I have started tracking calories again on my My Fitness Pal app, to keep myself accountable. I've put on a stone and a half since the week before I started chemo and I need to rein that in!!! The number of times today at home I have absent mindedly stood up and started to wander over to the kitchen for a snack , then stopped myself. I wasn't even hungry, it's just become a habit. Because I am never usually home this much, usually at work all week and out having fun at the weekends.... being sat right next to the kitchen all the time is lethal!
So yes, the app had kept me honest today and hopefully I won't get the disapproving eye roll from my onco nurse again next time she weighs me
Dikat thank you so much for sharing your photos. Really reassuring. Because my onco has now told me twice that hair loss can sometimes be permanent, he has made me super paranoid! But when I mentioned that to the onco nurse she says she has been administering chemo for over 15 years and has never seen one person not regrow their hair. So it must be pretty rare!
Also during my T session on Tuesday a lady popped in to say hi to the nurses. She had her last chemo mid Jan and I'd say she now has a good 1cm coverage all over. She looked great in general too, healthy glow in her skin etc.
MBJ I am a veggie too. I left SW when they canned green days, I missed my double healthy extras too much! I just calorie count when I need to lose weight now. It is better for me re portion control as on SW I used to go a bit crazy piling up the free carbs and it is so easy with new apps where you can just scan barcodes/ look up raw ingredients so easily etc. I miss the SW meetings a little bit though as I had made pals there. I think they have all since stopped going too though so no point me going back on their account!
I am not surprised that the funeral messed with your head a little about giving up the chemo. I can still say hand on heart that I would have made the same decision as you did if I were in your shoes. But now I would be worrying myself silly same as you I am sure. It is inevitable to have doubts after such a big decision.
I still wonder about Sissy60. I don't think she ever went ahead with her chemo at all. Looked like she was going to try alternative therapies instead. At least you gave it a Barry good go!
Maybe you could mention your worries to the moving forward course counsellor? You probably already have....
Sadly there is no BCC moving forward course near me. But when I went to Cheltenham Maggie's for my look good feel better thing, they told me about something they do that is very similar. 2 hours on Tuesday afternoons from 4.30pm, for 6 weeks. I would have to leave work early to get there but if I spin it as follow up treatment (which it is!) my boss should ok it.
Still a bit of a trek for me but I reckon it would be worth it.
Have a good evening everyone, and here is hoping we all get some sleep! My Fitbit tells me I got 4 hrs 43 mins last night. Which is not great but my personal best since Sunday yawn!
Im guessing with you having all Fec it might not start to grow until after you’ve finished but only 2 more cycles left so it won’t be long. Once it starts to sprout, it’s really encouraging. I’ve pretty much ditched the wig now. Might use it if it’s really cold 🥶 Once I went without it I felt quite empowered and no one takes a lot of notice tbh. Anyhow, was in the makeup bit in Tesco the other day and there was a pic of a model who had about the same as me so we are on trend 😂xx
Hi Susie B
Yes I have one more session on the Moving Forward course on Monday. It has been good on the whole. I think it depends on the quality of the speakers to be honest. Some of the sessions have been hard to deal with like being body aware of any changes in breasts or constant nagging pain anywhere. How to be vigilant and not paranoid, I have no idea on that one. The counseling session was really good and it's good to hear of other ladies experiences and worries. This makes you realise (well me anyway) that it's only natural to be afraid and worry. I am not sure what Monday has in store but I am sure they will end it on a high. The volunteers from Breast cancer care are great and know so much. One even offered to show her reconstructed boobs to us. I think she used her own fat taken from her abdomen and that was 13years ago.
So yes I would recommend it to you, although I assume the courses will be slightly different where ever we are.
I can see some of you seem to be coping with side effects and lack of sleep, I hope these settle down. Some lovely pictures of hair growth, mine is slowly returning but it's White🤯.
Well I have just booked a cruise for June from Southampton to Spain only as far down as Santander, some nice stops which we have not done before and it's calling back in Guernsey which is lovely. It has taken me weeks to get the courage to book as I feel I am tempting fate. I know it's silly and I can't live like that, but it's so much harder to look to the future than it was this time last year.
I definitely need to loose that stone now girls, had an awful week in Slimming World first week back gained 1/2lb 😋 well I did eat out three times what did I expect. Going to be more focussed this week , just made Quorn bolognaise ready for tea (I am a vegetarian).
I think the last few days have been hard after the funeral I went to on Tuesday I think it put me back to worrying over stopping the chemo again. But I am trying to rationalize it, not so easy early hours of the morning though when your mind is playing tricks on you, and that's without steroids.
Anyway I am fine really, went to see a close work colleague today who is home looking after her 90 year old mum who is now quite unwell. No plans as yet for the weekend I am just going with the flow or probably the weather.
I hope those who need it get a good night's sleep. X
Dikat, love the pics .....gives me hope on the hair front as I have a deep seated fear mine will never grow back xx
Well done Seasidesar,
for getting yourself on some Macmillan courses.
I am looking forward to my art therapy tomorrow.
I am feeling much better ( zero nausea) on T. Let’s see if or how or when the muscle aches kick in. I am booked for a yoga day on Sunday that I really would like to attend.
The brow gel sounds good.
Dikat thanks for sharing your pics. You have such an elegant head and neck.
Nap wise : I had 2 and 1/2 hours on my return which was perfect.
Edinbird Im into mini cheddars at the moment. They also do marmite ones. Also into pringles really strange anything salty!
Susie the brow stuff has microfibres in it. I really dont have many brows left but it attaches to tiny hairs. Ive ordered one of their pencils too but that hasn't arrived yet so in answer to your question I dont really know!
Hi all xx well done those of us getting poked and prodded today.
Felt generally spaced out and very uneasy about my sudden lack of tastebuds and liquids feeling slimey. I tried some cheese earlier and it was foul 😢 I think I need very very savoury flavours. I experimented with Marmite on a crumpet and that was borderline. Toast was fine eggs were fine. Very hot not too milky tea was manageable. Strangely a Starbar was good!
Any recommendations those of us who have already had a tastebuds exodus?
I was pleased I’d put on a few pounds but if I can’t eat things it might all fall off again... who knows. It’s not that I’m not hungry it’s more not stomaching what I normally like. I’m so pleased this didn’t happen last week when my friends were here
Lots to catch up on.
Trixielady we're off to Aix on 8th May which is just over 4 weeks after my final chemo session so I'm hoping all the side effects, including the tiredness will have passed.
Rosina mystery solved. I also wondered what H1 stood for. Glad Implausible asked first. Nice to know your chemo session went ok, just need to rest now.
Sonia28 happy to hear you've been ok so far with the steroids and T. The more positives I hear about T the better I feel about going onto it in a few months time.
Marlyn totally with you on the lack of sleep. Last night was my first decent night since the beginning of December. My doc did give me sleeping pills but I've been reluctant to take them. I took a couple at the very start of all this but couldn't see the point if every night was going to be 💩.
Daisydi the Benefit Gimme Brow sounds good. Can you use it if brows pack their bags and disappear completely? Glad you got your meds sorted. It's situations like yours that I'm so grateful for this forum so that we can compare notes, so to speak. Whilst we all appreciate we require different treatments there are times when alarm bells ring and things may need to be double checked.
Seaside Sar hopefully the shorter time with the cold cap at the start of your session won't affect hair loss. On T it might not be such a problem. Can't remember if T does or may cause hair loss.
Sandraindurham and Veronica hope you're both ok and you too if you're reading this Deano.
I had to text my wig lady earlier since only 1 of my 4 wigs have arrived and the one I have got is being returned. Got a reply saying wigs should be with me by the end of next week from the suppliers. I interpret that as ooooppps we've messed up and forgotten to send the others when they've arrived in stock. Still better late that never and fortunately I've already got one wig. I just want the option of going a bit lighter during the summer, which is what I normally do.
Hope everyone else is ok. MJB are you still doing the moving on course and is it worth going?
All the Best xxxxxx
Glad you are home Rosina and Seaside Sar. I'd be really angry about the cold cap Sar. Why didnt they wait? What's the point of having it on your head for 2 hours if they are not using it correctly. You've got through so much so far. Ive got a whole list of stuff to complain about tomorrow!
Well done, Rosina. Glad you're home.
I just got back too. So much quicker than yesterday. What a difference.
On my way out I popped into the Macmillan office by the waiting room. Signed up for 10 week art course and choir which takes place monthly. Never knew that's where all the support sessions were bookable. Should have guessed but that just about sums up my brain at the moment.
all went well. Back home now and to bed. H1 drove me there and sat with me. It was his first time. He was very good and chatted to all present.
Hopefully we all get some sleep.
PS last session was postponed due to low neutrophils ( value 1) I asked today and they were happy to tell me . They want them to be 1.5. I was 3.1 today after my break.
So not liver function. Good as I am drinking loads.
Marilyn, there’s nothing worse than no sleep.
It makes the world a horrid place. Barry treatment. Fingers crossed you get sleep tonight as you’ll be so tired that’s my normal pattern. Cyber hugs to you.
Reporting again from the oncology suite. In for my first dose of T today along with cold cap. Unfortunately cold cap was on for only 5 mins and then T was started so I don't hold out much hope for retaining hair after this 🙁
Marlyn, so sorry to hear you're suffering from lack of sleep. It's the worst thing and like Sarah says, a method of torture. I was awake for 2 hours solid which was bad enough so I dread to think how you're feeling.
Daisy I'm glad you got that all sorted lovely. No more worrying now.
Edinbird, hope you're feeling OK now. Take it easy.
Sarah and Rosina, thanks for the laughs you bring. I must admit, I was also wondering if you had a stash of husbands, Rosina!
Well, I popped into my school before chemo, donning one of my fancy headscarves and the office staff didnt recognise me! I got greeted with a polite "Hello" followed by "Hello! I didn't recognise you!" Oh dear!
No major effects from Herceptin so far other than feeling a bit itchy. I mentioned it to the nurse and was told to go and buy some Piriton. More expense 😣
Good luck today, Rosina.
Love to all.
Oh Marilyn what a barry mess. Hope you feel better real soon. xxx On another note I have just received my Benefit Gimme Brow volumising gel and I now have the best brows I have had in years. Looks very natural I think. So far a productive day have picked up my mouthwash from GP and spoken to oncology unit who apologised profusely that nobody had given me the new drug regime. I have to go in tomorrow to pick it up and yes it seems I do have steroids the day before. Thank god I phoned and I wouldnt have been any the wiser if it wasnt you all you lovely ladies so thank you. Hope you are all ok. Got counsillor in a minute. God this is neverending ....
Ah Marlyn, I hear you!
Sleep deprivation is horrendous, that's why they use it as a torture method!
Try to get as much rest as you can today, and maybe pop a Nytol tonight if your chemo nurse approves?
Ok, Debbie downer alert.....
last night was most definitely the worse night on record for no sleep...and I mean no sleep whatsoever in any shape or form. My brain wouldn't sit still, did all the usual...herbal nytol, yoga nidra, counting sheep....but the brain wasn't having any of it...oh no....suddenly it was jumping back 30 years ago to some insignificant random thing to jumping ahead wondering if things will ever be normal again...feeling mentally pretty Barry right now. And if one more person tells me how well I look I think I will have to rugby tackle them to the ground!
Aha that explains the H1
Funny story: I had a best friend called Alison. Sadly she passed 5 years ago (nothing cancer related). I definitely saw her as my best friend but she was always talking about this other friend of hers called "Sarah Prime". I thought she meant like Optimus Prime, the transformer ie the best Sarah.
For literally years I thought it was her rather passively aggressively reminding me that not only was I not her top friend, but I wasnt even her top friend called Sarah....it made me a little sad.
Eventually I discovered that Prime was the woman's actual surname and Alison didn't even like her that much!
I have a school friend ( we go back to age 15) she is happily married with 3 girls and a great sense of humour. She refers to her husband as H1 which makes me laugh ( she also refers to her daughters as K1,2and 3) on her FB posts. So she is the originator if this trend.
Makes me smile even thinking about it.
PS she also is a great baker and post photos alongside how her weight and diet (always postponed) are doing.
We also share a love of shoes. She goes for high heels.
well T and steroids have been nicer to me than FEC so far. i managed to get a good night sleep, probably due to very few hours the night before, but Ill take that. I am up and out of bed, which is normally a no go for 2 days after treatment. Long may it lasts. I start my injections today too.
Good Luck today Rosina and Seaside Sar.
Implausible great news about your refund, but not so good they made you jump through hoops. I find lists work well with mine, as they don't ever see what needs doing. I just add them to the fridge and they tick off when done.
Ocean 21 I love your garden pictures, they put my garden to shame, but the caravan garden is coming on nicely its more relaxing to potter around there.
Trixielady nice to hear from you.
Neetinoo, I love your bird story, kids are so sweet.
Edinbird, rest up today it sounds like you need it, and your friends tattoo as you say only one word ouch!
SusieB, I find if fascinating that all the trust do things slightly different, and how all of our treatments are all slightly different, but then i suppose all our gremlins are all different too. Glad you got a good night sleep it makes all the difference.
Sandra and veronica hope you are both holding up well.
Can't believe it but I actually had a proper night's sleep😴😴😴😴😴😴☺. Woke up just once to go to the loo, went straight back to sleep and didn't wake again until hubby came in with a mug of coffee for me prior to going to work🍵. I didn't hear his alarm or or anything⏰. Long may it continue.
There seems to be a lot of talk about T and it's different side effects to FEC, but I'm still going to be on C so must have a look at the info I got from the hospital, all 10 pages📑 of it as I can't remember what it's side effects were. I'm finding not having chemo for a while is brilliant ☺. Hopefully you'll all find out for yourselves in the not too distant future as you finish completely, or in the case of Edinbird and Deano, have your own little breaks.
Implausible well done for hanging on with your insurance phone call. I'm sure it's all designed for you to give up and not bother to claim. As for the chat to the 16 year olds their reaction was just like my 26 year old and he should certainly know better. He's on leave from work this week but no offers of help at all and I just can't be bothered to ask. I nearly lost it on Mon with him, about not helping but hubby stopped me. I'm still annoyed with him now😠. Maybe we should think about decorating his rooms in pink or something.
Rosina love today's quote and the picture of the wave - I love the sea🌊🌊☺. And well done for raising money for Macmillan.The do a brilliant job here at Yeovil hospital.
Ocean21 more beautiful photos. Thank you. Will you have gites or rooms for holiday rents? It all looks so relaxing and colourful in the sunshine☀️.
Edinbird that tattoo is huge! Ouch! Although it looks better than my older nephew's who for some weird reason has got some spider tattoos🕷🕷🕷🕸 on his neck, which hopefully aren't for his mother who can't stand spiders. Ooopps, perhaps that's why he did it? Only joking☺. He's very much connected with the arty, fashion, photography type of world up in London so that might explain it.
Love the egg story Nettienoo. Little children seem to do the sweetest, kindest things - bless💕.
Right can't stay here much longer, time to get up plus my tablet needs feeding (recharging).
Be back later. Have a good day xxxx
Trixie thanks for thinking of me... I can report drinks are generally yucky all round, boiled eggs and toast has worked though!
Feel less achy now I’m up but a bit fuzzy. I’ve halved the dose of the heart pills and seems ok so far. I think today’s fuzz is T shaped not beta blocker shaped.
Weather is lovely but it’s gonna get worse so I’m going to get up and at it and I can collapse later if needed
Morning ladies, its looking lovely up here in the lovely North East
Good luck for today Rosina will be thinking about you xx
How you doing today Seaside Sar my muscle & joint pains didn't start until 3days after my taxol & Herceptin and lasted for 3 day but eased after the first
Edinbird how you holding up whats happening about your heart trials??
Implausible pleased your insurance has decided to do what they should have all along , be careful side effects seem to show their face once you feel they won't well definitely in my case, wish i was talented like you xx
Daisydi how you feeling today ?
Ocean21 you take beautiful photos your garden is a dream feel , I find listening to music really helps but can make me so emotional x
SusieB when you off to Aix-en-Prevence??
Daisydi how you feeling? What side effects have you been getting ? Xx
MBJ how are you doing hunny, are you still attending the moving forward class ? Have you got any hair returning yet? Have you had any side effects from your tablets? Xx
Sonia28 how are you doing hun?? Xx
Sandra, Veronica whats happening?? Xx
Also Rosina, I have to ask, you always refer to your hubby as H1. Makes me wonder, do you have a spare in the cupboard? H2?
Yes I am sure it was a fob off move Rosina. But frustrating to know that all I had to do to get my money was to phone up and just say "I've got the letters", I could have done that 6 weeks ago although I am rubbish at lying so it probably wouldn't have worked....
Very best of luck with your first T today.
I am still feeling ok, but Edinbird is one day ahead of me and has woken up grotty so maybe this is my last day before it all kicks in. I had better make the most of it!
I was rather hoping to still be ok tomorrow as between 12 and 2 near me there is a new beginner's life drawing and life sculpture class starting up, £15 to cover materials. Sounds really good and I would love to have a go, but I suspect I might not feel up to it. Will have to see how I feel tomorrow morning.
Is anyone else chemo-ing today?
Love the grandson egg/chick story Nettie Arlo is a lovely name!
I'd love to be a granny- my oldest kids are nearly 30 but neither wants babies. And to be honest I dont think they or their girlfriends have the maturity for it just yet! But then again I was 21 when I had my first and you just have to grow up when the moment comes whether you wanted to or not!
Have a good Thursday, all
don’t worry. As Ocean21 said all NHS trusts and their teams are different and have their preferred methods.
They also discuss each patient individually ( no one size fits all).
have just seen your pics.
Will you be renting rooms at your place in the future?
Just wondering, ‘cause I would be on a train down there if you ever do so🌿
‘So why did I waste all that time and effort getting them???? ‘
To fob you off so that they wouldn’t have to pay it of course. This is also why they have a 45 minute wait time ( it’s called hurdle 1 - has it always been as long as this ?).
I am so pleased for you.
As you say not a waste of effort as your partner needs these letters.
Glad to hear that you are feeling ok on T so far. Hope it remains like this. I am getting my dose today.
The steroids kept me awake for what seemed like ages ( also H1 was snoring and my stomach decided to join in with rumbling). Finally got to sleep after mentally going through my yoga nidra and asking for help from any powers that also happened to be awake and listening to me at that time.
Interestingly enough , the message that came back to me was ‘sermon on the mount’ so I will re read it today ( or watch it on YouTube).
Glad you mentioned the size of Edinbird’s best friends tattoo. My sentiments exactly.
The missed event was a teachmeet at a agricultural college. To far to drive when feeling weird. Oh well. I am sure there will be another time.
My walk was better for me 🎄🌲🌳
got my 10,000 steps in. I have also so far raised £370 ( plus £75 in gift aid) for Macmillan cancer so I keep on walking.
Thanks every one,
good day to all.
Good luck Rosina!! Anyone else? I lose track...
Well I slept better and didn’t sweat. However I woke with a sore neck swollen glands furry mouth aching thighs and my bottom is rather sore...
Its like I’ve had pretend chemo and now they’ve switched me onto the real drugs. But I shouldn’t complain as I don’t feel bad enough for painkillers. Really hope I can eat and drink as I was so pleased I seemed to have avoided the taste issues.
So I feel rough in comparison to before but I’m not unable to get up. Let’s see how this one goes for the rest of the day.
The egg story made me smile 🐣 but feel guilty as that’s what I fancy to eat! 😬😂
Implausible glad you got a bit of 😴😴😴😴😴, hopefully enough to get you through the day. I took my last steroids on Sunday evening and am still wide awake for a few hours in the night so I’m thinking I can’t blame it on being wired from steroids still. Did someone mention Nytol? Is it allowed on chemo then?
It may just be anxiety as I’m in the “danger zone” time and am waiting for a dash to hospital. So tired, I haven’t picked up my knitting for a couple of days......😟.
I hope the girls who have had chemo already this week continue to cope well today. Updates if you can please my darlings. Has anyone got appointments/treatments today or tomorrow?
Ocean, my grandsons found a little egg in a plant pot in their garden (fallen or chucked from blackbird nest in gutter above). My daughter told them it can’t hatch into a chick now as it isn’t in the nest and mummy isn’t sitting on it. 3 yr old Arlo disappeared inside and reappeared with a fluffy chick he got from the Easter bunny and it is now sat on the little egg (and probably rather wet now). I love those boys so much it does actually hurt sometimes! Xx
I meant the land of nod
I must have been more tired than I thought I was, and I've missed the editing window now.....
Morning everyone x
You are hopefully all in the land of now by now. I wish I was! But these steroids keep me wiiiiide awake!
So time to have a catch up.
Susie B, well done for the bandana and fringe combo outing, I bet you looked great! It is nerve wracking the first time you go out in public with a new look, worrying if people will catch on and give you the "pity stare". I hate that! Luckily most people are so preoccupied with themselves they barely look at anyone else!
As for the "housework talk", it must be the week for it, this morning before I read your post, I had the same talk with the 2 x 16 year olds in my house. I pointed out politely that as neither is currently at college or working, they could surely fit in an hour each of housework or work in the garden each day, given that I AM working AND singlehandedly funding their existence AND going through chemo. "But we don't know what to do".... "just look around, see what is out of place or dirty, and tidy or clean it!!! How difficult can it be????". Then they get all defensive. I don't want a row. I just want them to help out a bit more.... sigh.
Let's see if it works. I doubt it.
Trixielady, good to hear from you. Those out-of-nowhere tears get me sometimes too. Most annoying when you can't even figure out what you are even crying about!
Seaside well done for getting through a long old day! Hope you didn't get any unpleasant reactions from the Herceptin
Rosina I can never remember my passwords at the best of times! No chance with chemo brain! Pity you missed your event
Just read up and Seaside said exactly the same thing about passwords and chemo brain great minds (or currently not so great minds!) think alike
Sonia well done with your first T, glad it all went smoothly! I only have one ovary anyway as the other went when I had a hysterectomy 2 years ago. Nobody has suggested whipping the remaining one out though....
Daisy, glad you had a good chat with your onco. It does seem odd they haven't given you steroids to take the day before as my onco and onc nurse were both adamant about it being very important. Definitely worth you giving them a quick call to double check, but I wouldn't get too worried about it in the meantime. No fatigue yet for me but that would be the 'roids! Tomorrow the slump will hit me....
Edinbird. You may have heard this before but that tattoo is huuuuuge! Not surprised he nearly passed out!
Ocean - my chemo buddy who I see at the hospital every cycle is on 12 x weekly Taxol after 4 fortnightly EC. She said she really felt rough on EC and sickly, but is now 6 weeks into Taxol and loving it in comparison. No nausea. And she is well enough to work 4 days a week, the only day she has off is the chemo day on Tuesdays.
As for me, I've had a busy day, getting loads done, riding that steroid energy while it lasts!!! I was so busy in fact that I completely forgot to do my tummy injection at 1pm! I usually set an alarm on my phone that says "stab yo'self" but I forgot to do it this time. Didn't remember till about 7pm when I was out for a walk so didn't stab it until 8pm, 7 hours late, oops! Hope it still does the job!
I'd be more worried if my neutrophils weren't so crazy high yesterday
One of the things I did on my busy day was sort out the insurance. Get this, so frustrating but good really. I was on hold for 45 mins then got through. And I said to the lady that I had FINALLY got all the no show letters they had asked for to prove we never used the flights. Then she said as the claim was under £2k SHE DOESN'T NEED TO SEE THE LETTERS THAT THEY SPECIFICALLY ASKED ME TO GET and she refunded the money into my bank account instantly!!!!
So why did I waste all that time and effort getting them????
Luckily it wasn't a total waste of my time as my other half's insurance DOES need to see the letters for his half of the claim (We aren't married and live separately so he has a separate travel insurance policy).
After sorting all that out I walked into town (a nice 12k steps round trip) to pick up my weekly comics from the local comic shop, and have a nice chat with the owners. They had got me a present - a really cool t shirt (which I suspect they got free from a supplier but it was still nice of them to give it to me ). I was there nattering to them till gone 6, they were supposed to shut at 5.30. Ended up getting kicked out by the shopping centre security
No nasty side effects from T kicking in yet, but my week 1 grottiness doesnt usually kick in till tomorrow/Friday, so there is still time!
Oh and I also made a start on that final comic page. Can't wait till it is finished!
Night you lot. Good luck for tomorrow everyone.
Thanks Ocean. I did ask my onco about nausea as I suffered terribly and he said it should not be as bad if at all. Im getting myself all worked up and I need to calm down. I will speak to them tomorrow. Lovely pics xx
I have my first Taxol session next week. I’ve been given a prescription for the medication I have to take beforehand. I looked earlier today and I have to take cetrizine ( anti-histamine)and azantan ( ant- acid) an hour before my appointment. No steroids, unless they’re going to give them before / when I have the infusion.
Im not worrying as protocols are different , different oncology teams favour different methodologies. Add to that our individual circumstances and you can run yourself ragged trying to work out what a ‘standard’ treatment is.As with EC infusions I’ve also got a patch of anaesthetic cream to put over my port , that has to be put on an hour before too.
Ive got 9 weekly sessions to look forward to. From all your responses I seem to be the only one having them like that. My oncologist hasn’t written me up for as many nausea meds so I’m hoping that’s an indication that the Taxol is less of a problem that way than the EC. I really really struggled with nausea on EC so crossing my fingers I’ll have a different experience with Taxol. Xx
Hi Rosina, no Im not keen on the steroids either but I am scared of an allergic reaction too! I keep developing different allergies. He did say they would give the steroids iv on the day but thats still not the day before. I feel so totally lost in all this. Hope all goes well tomorrow xxx
my oncologist said that the steroids were to prevent allergic reactions to the T. I am not keen on steroids.
Much prefer walking.
I went out again at around 6 pm as I felt really odd today after taking such a high dose.
Thought my head was turning to mush and felt like an idiot.
Then I watched the ‘Tipping point ‘ on Tv with my mum-in-law and realised it could be much worse ( at least my excuse are the drugs I am being fed) not sure what the contestants excuse was they were getting loads of questions wrong 🤪
To make you all feel better... I would have chosen two hours of cold cap and chemo over this... he nearly passed out from it and fell asleep in the car on the way home! We don’t choose our pain but we are all beautiful flowers anyway and now D has one on his neck. It’s for his mum not me tho!
Stick a cannula in my hand and pump me full of poison any day over a neck inking! 🥴
Edinbird, a tattoo sounds interesting. I hadn't thought of that. I've often fancied a small butterfly on the back of my right shoulder, but have never had the courage. Like you I'm trying not to think about the surgery, but sorting some of the practical stuff, pjs, bras, etc. At the moment I am only allowing myself to think ahead to 14th May, the day after we return from France and I have my PICC care. I'm finding it easier to cope when it's broken down into segments. And yes ultimately I'd rather have a dent rather than a lump too. You sound as though you've a busy day and as far as indigestion goes, you have my total sympathy😲. Hope you get a decent night's sleep🛌🏾. I've totally forgotten what that feels like😪.
Sonia28 well done for getting number 4 out of the way. I'm not surprised you feeling unbalanced. At least you'll really appreciate it when they sort it again for you. Like the thought of shorter cold capping time but may take longer than some of you as I will be having C with T☹.
Have a lovely evening everyone and get plenty of rest. xxxx
Thanks for all your messages . Don't know what I'd do witbout you. I finally escaped at 5.30pm with nothing to report other than I am cream crackered. I've had my dinner and a quick walk to stretch the legs. Already had my 8 steroids in preparation for tomorrow. Will have an early night and hope I get some sleep 😴
Daisy, it sounds like you've got a plan to find out about steroids. I do find it strange how things vary depending on which hospital is treating you. I hope you get it sorted. It's not nice to be worried.
Well done Sonia, that's another one down. Hope you feel OK.
Love you all loads.