Oh Edinbird 😞 it's never nice to fall out with a friend 😞
But honestly, I think if we are joking about our OWN cancer we should be able to make the humour as black as we like! I've certainly been guilty of some proper gallows jokes!
I think he is being a little unfair on you. But it probably comes from a place of concern, and worrying about you. Not that that helps much when things escalate into a big row!
Re work - so you haven't officially been off sick at all yet?? Blimey, I've been off since mid Jan! But that's because I had my op Jan 21st, then a follow up op early Feb, and then started chemo, so my sick notes just keep extending. But the problem with that is I've now - or will have by the time my current sick note runs out - used up the full 2 months sick pay that they will pay per year. So I'm kind of screwed for the rest of chemo, the radiotherapy (daily for a month in another town over an hour away), and recovery time from my final surgery in June..... Bit of a problem when I'm the only earner in the house 😕 I'm going to pretty much throw myself on their mercy tomorrow, maybe cry a bit!
Interesting to hear how everyone else is getting on re work. I can’t have a phased return until I’ve been off proper. So I can self cert for 7 days and then work the next two weeks without a note. The note however has enabled me to work from home.
Got bloods tomorrow ahead of cycle 2 on Monday. Wish I was getting it tomorrow tbh. Me and my best friend had a huge row today he’s finding my illness and reliance on him too much along with a lot of other things. My black humour has really affected him and it seems a lot of things I’ve been saying about cancer as jokes are not funny and quite insensitive when he’s repeated them to others (which was never the intention!).
So we’re getting some space hence I wish tomorrow was the day I’d be wiped out again. But I’ve gotta respect his feelings so a few extra days of trying to stop worrying about him and worrying about me instead before I get confined to my bed again. Things will resolve but I’ve never been any good at our I need some space times. I’m too needy without being ill 😞
Well done on drinking all that ginger tea, Rosina! (I hate the stuff 🙂 ) and on getting another session out of the way.
2 down 🙂
well done ! I am back home too and in bed. Drank a thermos flask of ginger tea whilst being dosed.
My friend Jo Anne came round for the last 90 minutes of me sitting there with the cold cap on ( I forgot it was on my head and was just going to get up and follow her out when it was time to leave 🤪) and we had a good catch up and a laugh.
I was a bit more emotional today ( I think the enormity of it all has caught up with me 🙃) but the Chemotherapy nurse was fabulous (again). It wasn’t the lady I had last time but she was right they do have an excellent team.
All good. Love and hugs to all💕
Here's to an easier time for you the second go around, Marlyn! Spaced out is better than hospital stays, so fingers crossed.
And Ally - getting a doc's note is the easy bit, my oncologist wanted to sign me off till June!! But my sick pay has run out.... so I basically need to sweet talk them into paying me for every third week out of the goodness of their hearts 😕 it's a small privately owned company and when my old boss was in charge it would have been no problem. She is so lovely. But now she has sold up to a bunch of people I barely know, I suspect they will be less generous.
I don't want paying for the full week, i can get by on 3 days a week pay, just, but i will struggle to manage pay-free every third week....
Just home from chemo cycle two, anti sickness meds ramped up and fec strength lowered, so fingers crossed I won't end up in hospital tomorrow! Feeling very very spaced out, don't remember feeling quite this spacey last time but I was probably vomiting too much to notice??
Solidarity sisters.....love you xxxx
I am going to meet my manager too in regards to returning to work. I’m going to ask to work the 2nd and 3rd week after chemo, as I agree that I probably will be not up for working the first week after chemo. It may help to get a doctors note for a phased return especially if you work for a local authority xx
I feel the same about being off of work too ☺️
yup, Master Chef should be pretty safe 🙂 although then again, reality shows always seem to require the contestants to wheel out some kind of sob story nowadays, so you never know!!
I was watching a body painting competition show on Netflix a couple of months back, called Skin Wars, and that had a whole episode with breast cancer survivors, they were each being painted as kind of warriors to make them feel powerful and love their bodies again yada yada. Thankfully I saw it before my diagnosis, when I had no personal connection, and found it interesting - if it popped up now I think I'd have found it difficult to watch! Especially some of the segments where they asked them about their experiences and made them cry (because American telly 🙂 ). On the plus side, I remember thinking how great and healthy they all looked, so that's something for us all to look forward to!
I like your roller coaster / big wheel analogy. Let's hope we all end up on a nice, peaceful, stress free scenic ride like a lazy river 🙂
On a whole other note, I'm popping into work tomorrow for the first time in 7 weeks, to discuss my return to work at the end of this month. I thought I was really up for returning to work, but now I'm less keen. Maybe all this time at home has just got me sold on the whole life of leisure thing!! Still - I don't have an awful lot of choice as they only agreed to pay me until the end of March and I can't pay my bills and feed my kids on statutory sick pay! This is when one of those "husband" things might have come in useful 🙂 I'm going to ask to come back on a 3 day week basis, and work 2 weeks on 1 off during chemo (as based on how my first cycle has gone, I know I won't feel up to doing anything in the first week) - and I'm hoping that they will pay me for the 3 days even in the week I can't work. I'll see what they say.....
Awoke this morning at 5:am🕔 and realised it's been exactly 3 months since my diagnosis. That got me thinking, if the first couple of months from diagnosis to the day before chemo, when I came to a sence of calm, was the roller coaster ride from hell🎢, what fairground/theme park ride would I be on now? Decided on the big wheel🎡. Starting at the bottom, climbing out of the abiss, to the top feeling quite well, then dipping down to day 5 (we've all been there), then downwards to the days when the immune system is pretty low, then going slowly upwards towards the top when for a few days normality, whatever that is nowadays, almost returns. Only for the cycle🚴♀️ to repeat itself. When it comes to surgery I'm hoping maybe the next roller coaster for me will be a kiddies one. OK, quiet musings over.
Leading on from all the cancer stuff on tv I think there is more. Eastenders are following a cancer story line and even the final episode of Call The Midwife, didn't escape the theme☹. We'll stick to Master chef and Who Wants to be a Millionaire for now.
Take care everyone!
Yes you are right I don't think there is anything they can tell me next week that will convince me that my mortality risk is not hugely higher from chemo than cancer. Very upsetting and disappointing but too much of a risk for me and my family to continue.
First of all, Seaside Sar, I'm really glad that round 2 went smoothly and they put you in a nicer environment this time, it makes all the difference doesn't it? I hope you are keeping the worst of the side effects at bay.
MBJ , your oncologist would now have to work very hard indeed to convince you to continue with chemo as I think you have incredibly compelling reasons not to. I guess it is worth hearing him out but I can't imagine what he could say to change your mind!
As for everyone fed up of hearing the same old language from well wishers , I think for our own sanity we just have to remember that they all mean well, and if they sometimes slip into the cancer clichés - you're so strong! You've got this! You're going to kick its arse! - it's only because they are worried they might say the wrong thing and those phrases feel "safe". I'm a lifelong atheist but I'll happily take an "I'll pray for you" from my religious pals as I know it comes from the right place. I don't even counter with a "but surely by your logic, it was your God that gave me the cancers in the first place??" because that would be mean 😄 and besides, in a theological argument, nobody wins! 🙂
And the "cancer is everywhere" thing - that's just our brains playing tricks. I'm fairly sure they aren't mentioning cancer on the telly etc any more than usual, but we are just noticing it every time. It's like when your cat dies and then you see cats that look like them everywhere. Or, in a happier example, when you've booked a holiday to Egypt and then people are suddenly all talking about Egypt.... it's just a sign that it is on our minds. And of course it is because we are bang in the middle of it right now.
Edinbird, sorry you had a tough day yesterday but I'm really glad that your sore throat problem has cleared up.
And to everyone else - hi! Hope you are all coping. Is anyone else due round 2 this week?
Thank you for thinking about me and my situation. I will be open for a discussion nest week with my oncologist. Although he was very uncomunicative when I first went for my appointment just you have come for chemo, these are the side effects sign here.
I have already had surgery a mastectomy with reconstruction. Followed by lymph node clearance (2 nodes positive) again my choice as I was offered the POSNOC trial here where 50% of participants get the surgery and 50% do not. This was a randomised controlled trial so neither me nor the Dr would have any control into which arm I would go into. Again I studied the risks/benefits looked up research studies. I the end I found I could not take the risk of leaving my lymph nodes there as obviously at the time I had no idea how many were involved. I thank God every day that I made these decisions as I could have had a lumpectomy followed by radiotherapy (I did not want this as I have excema and lots of skin allergies).
As for the chemo like everyone. I am sure I was upset when I was told with my ONCO score of 27 that it was on the e cards. However I prepared well got 2 wiggs, cut my hair, bought every household cleaner known to man. My first chemo and cold capping went ok. Felt fine there bit sicky towards the end. First few days nausea but no vomiting and a horrid headache .Also developed a dry mouth.But all that changed on day 6 I began to feel shivery and had a temp of 38.7.
I don't know if you have read my posts about the awful care. I received in hospital but it was horrendous. But taking that our of my decision making which I obviously have to do I really don't think my body would survive another round of chemo.
I think I was extremely close to death shortly after admission I am not saying this to be dramatic but from 40 years of nursing experience. I have never felt so ill in all my life and thank God for antibiotics other wise I know I would not be writing this .
You are right I am very afraid of taking the hormone tablets as I do react very badly to medication. I also have to carry an EpiPen as I had an Anaphiatiic reaction to food a few years ago. I really hope I will be blessed to tolerate them and carry on with the biophosphate infusions as well.
Thank you for your concern for me it helps to write about it as it can clarify things and yes you are right I need to keep an open mind about it all. But I will not be putting my life at risk again like last week. I think my 2% benefit for the fires five years must be weighed up against my % risk of developing neutopenic sepsis again next time.
add to my Taxol side effect
Initially dry mouh, now become watery mouth like a baby w/o drooling due to swollen mouth wall.
cracks around nails, applied lot of hand cream at night, usually heal in 2nd week
Hi MBJ, I am thinking would it better to discuss with your onc instead of informing him directly about quitting chemo. Maybe, you can check with him what is your tumor marker result before chemo and could he offer another tumor market test and see if the chemo is working on you (ps. I am not any medical person) Though 1 cycle may not be able to tell but no harm to ask. I just finished my last dose of T and will start hormone therapy. I was not at all scared of chemo but freak out of the hormonal drugs like Letrozole which I will be on. Yes I encountered most of the side effects during Taxol/Purjeta/Hepceptin treatment (low WBC, red mouth, swollen mouth wall, diahhrea, feelng hot and cold during infusion, sole/butt/back pain -mild, no med is needed, sudden runny nose, tingly fingers, rash) but at least, finger crossed, all those side effects would be reversed after chemo which is in months. But, for hormonal treatment, we are talking about 10 years and if unlucky enough (unfortunately from this forum it is quite likely), Letrozol can damage the bones. As seen on ths forum quite a big number of ladies quittted in mid of treatment. (ps. though my onco said still a low percentage out of 'so many')
PS. - (1) there is no predict test in Canada. patients are given chemo all depends on their onco evauation and judgement. My onco told me if after surgery, chemo is used to kill the microscopic cancer cells which were floating in the blood (2) when treated with EC in 2011. a finger was swollen (washed vegetables at home) but no rise in temperature. Only awared at that time my WBC dropped to 0.0. Was given 2 hourly antibiotic for 3 days. Due to shortage of beds in hospital, was sent home immediately after each antibiotic teatment. Disconnectrd IV stuff left on arm for 3 days. After antibiotics, paid CAD$2000 (reimbursed using my own insurance) for 14 days WBC booster injections. Blood test all passed in remaining 3 cycles (out of 6) (3) when treated with Taxol, blood test all passed through the last cycle. Checked with nurse for the no just before last T infusion. 1.1 8-). (4) energy level remained normal all the way up to last T. Everyday after dropping off my daughter to school at 8:30am, must window shop for at least 2 hours. EXERCISE
Thank you for airing my exact thoughts on people and their opinions.. I have to be very clear that I am still human and normal. I have never experienced discrimination until now. It really makes me not to want to tell unnecessary people, as it is like a replayed conversation over and over again.. and I am
not a victim of this. I and we will all get through this. Rant over 😁
Edinbird, I hope you have a restful sleep. I’m sending you a huge hug too. My hair has also started leaving my scalp too 🙄
But on a positive, I have read and started drinking aloe vera juice. I read it’s good for chemo xx
Deano, we keep dodging telly because it is everywhere! It is plain abuse!
And you know what? if all the money that has been given to research or charities had been really to discover how to stop this, instead of going straight to CEO's pockets and endless holidays and parties, we could have by now a cure!
And, oh, yes, asking us how's things are just to say that they feel sick or bad or frail or whatever when they are this and that, it is not helpful and I, personally, feel that it is disrespectful!
I just wish the world felt so rubbish as I see my daughter being everyday and .just.stop.demanding!
that's it shutting up now!
Hi Susie B
Yes it's all over the TV again in
Mother Father Son tonight.
And don't get me started on Cold Feet. Why did she look as if she hadbbeen to a spa when she had chemo and then went to a barbeque and drank wine. Me I end up nearly dying of neutopenic sepsis on day 7 all crap.
Oh and hair loss is really painful.
Sorry getting better so feeling angry with everything.
Thanks for your responses I’m glad it’s not just me as although I thank people for support your all right in not wanting to have pity or words of you are so brave...we have no choice but to get in with it
I’m watching supervet and even a bloody dog has cancer and owner says she’s had it - I tell ya you can’t escape it even on a vet programme. If I never see or heard the word cancer it’ll be too soon role on the summer
Take care you lot out there and most of all stay healthy and sane ❤️❤️
No it's just you, cancer is all over the media. Here in the West Country it's the low take up of smear tests. I keep wanting to scream at the tv or radio I would have gone (smear test, mammogram and bowel cancer screening we're all due Nov/Dec), but bc got there first. One at a time please. As for crap days I take it out on the cold call phone calls, even though we're registered with telephone preference service. I vent all my anger on them, even swearing at them, serve them right for contacting me when they shouldn't.👹. I feel a lot better afterwards☺
believe me you not the only one, I found myself sticking two fingers up at my laptop last week at all the " your so brave and strong " emails, hubby walked in on me and asked what I was doing...so told him to do one too! Thank god he knows me so well...so he joined me in the two finger salute! Xxx
Marlyn, so glad I am not the only one pissed off by people and situations!
It makes me so grrrrrrrrrrr
spot on sister! I know people mean well but your right...I bloody glad it's all getting sorted...the one thing I hate is the pity party...bog off with your sympathy frowns and " words of wisdom " I am not brave I am not strong yes by all means go ahead and chat with
the angels but I am just getting through this as best I can...I simply have no choice but to crack on.....and one day we will get our lives back.....solidarity my sisters xxxxxxx
spot on sister! I know people mean well but your right...I bloody glad it's all getting sorted...the one thing I hate is the pity party...bog off with your sympathy frowns and " words of wisdom " I am not brave I am not strong yes by all means go ahead and chat with
the angels but I am just getting through this as best I can...I simply have no choice but to crack on.....and one day we will get our lives back.....solidarity my sisters xxxxx
I know it’s tough when it’s all over media it doesn’t help either just concentrate on you and staying well and blast away any negative thoughts this treatment will not last forever and it’s there to help you and remember if they can treat us with chemo they can cure us even though it’s **bleep** just wish it would kill my fat cells instead of every other bloody cell keep strong darlin and remember we are all here for each other xx
I'm back from my treatment and I'm pleased to say it went well. I cold capped and even had the blasted thing on for much longer than necessary as there was no one available to turn it off. 😂 Hopefully it means more hair for me! Today was a completely different experience to my first one as I had to sit in the room with all the blood cancer patients instead of the tiny room with the tumour patients. It was much more welcoming and I had the loveliest nurse ever. It all helps. 😊 She jokingly said no one ever wants to go back to the other room but I seriously don't want to. Might play dumb next time and just head into the wrong room.
Edinbird, sorry you're feeling down. I had the same last weekend. It does get better. Hope you feel happier soon. X
Marlyn, good luck for tomorrow. You've got us all cheering you on....Go girl! X
Anyone heard from Stargazer1 lately? Hope she's ok.
Trixielady, I hope you're ok after your uti scare. X
SusieB, days 5 and 6 crappy for me as well. I hope you start to pick up soon. X
Take care everyone. Xxx
Thanks Deano xx yeah there was something about crowdfunding that upset me last night. It will still be playing in my mind that I don’t have my staging yet. Or my genetics results. They’ll be due any day. My next scan is next Weds. I still don’t really know what I’m dealing with here. Once I do I can process it and get some counselling but I’m still in limbo trying to act as if things are normal but they’re not 😕
Bless you my darlin it good to get upset it’s better out than in.
Is it me but cancer is all over the media tv, radio etc etc and I am absolutely sick of it does my bloody head in....family friends apologise and say I’m sorry you got cancer well after hearing this for the 100th time I said you know what I’m glad they bloody found it and can treat it as it would be a different story if they hadn’t their response was - your so brave....ffs
why do people think I’m constantly upset yes I’m pissed off but I got over it and wanna get through this treatment ASAP and then move on....and it is out right to feel down at times
We can do this we’re all sisters and in this together sorry if it seems I’m ranting but if anyone else apologises to me for this horrible thing happening to me I think I will scream 😆
I’ve caught up on the posts and I ❤️ You all for sharing your experiences xx
Thanks Rosina xx maybe my body knew it was time for my hair to start falling out and it was preemptive as I’ve just had my first hairball in the shower...!
And I didn’t cry, I actually laughed as my hands got covered! It’s probably a tiny amount given the length of my hair and how much I have, won’t really see until it’s dry. My friend will be really upset at this though I was saying to him earlier it’s all still there but he ended up with one of my hairs in his beard and I made a joke... we all knew it would happen. Hope it won’t be too drastic 🤞
I seem to watch sad movies when I am like this. This allows me to cry. I then feel better.
Hope you feel better too. We all have ‘off’ days.
I am currently at my gym reading the papers while my daughter does her spin class. I used to do it with her.
I left my sad movie to bring her.
I will watch the sad ending when I get back.
I have read the sad book years ago.
Tomorrow will be another day.
Something must be wrong when this poor wee pup couldn’t make me smile for more than a couple of minutes 😕
Well to cap off a crap week for me my hair is starting to fall out too. Hope it will only thing as I am not having any more chemo anyway. Be just my luck to be bald after one dose.
Maybe it’s just Wednesdays are rubbish? I’m due my next cycle on Monday and I just felt odd when I woke up, didn’t feel like eating, had woke and cried in the night and just generally been down today. My friend was hungover and too much on his mind too so a visit there didn’t help and I got home and cried again even though my cousin sent me a cuddly puppy toy in the post!
Not so bad now I’ve made myself do some work. But I realised my throat doesn’t even hurt any more and I’ve been too meh to even notice! Just want today done and wake up better tomorrow I hope. Maybe it’s being isolated from work, maybe it’s me absorbing my friend’s problems like I always do but I’m already to the brim. Maybe it’s hormones now I’m off my pill. I dunno. I guess every day can’t be good, or even alright.
Glad they are trying to sort things for you Marilyn. Hope all goes well tomorrow. Just think it cant be any worse than last time. I'm not seeing anyone until about an hour before my next chemo but to be honest I dont thnk they could give me any more anti sick meds anyway. Loads of love and luck xxx
your all having such a horrible time, I hope and pray things settle for you.... just wanted to say my first cycle was hell too, with me ending up in hospital the day after with vomiting and dehydration....I too questioned the whole thing. Today I had appointment with oncologist who listened and was very sympathetic....my anti sickness meds have been ramped up for tomorrow s cycle and he said they will reduce the fec strength.....I have everything crossed that my 2 nd cycle will be better...
when is your daughter due her next cycle? Sending you and daughter hugs and as much positive good stuff as I can muster....oh...and rant away....xxxx
Hopefully days 6 and 7 will be better☺. They were last time. I think the culmination of over 3 months without a good night's sleep is also taking its toll😴.
Hadn't thought about chemo as punishment. Perhaps without the meds to alleviate the side affects?
Well, just back from onco, and uber impressed they had my blood results back from this morning! Chemo can go ahead tomorrow! The thought of delays is unthinkable, just need to crack on....on a positive note, I have been prescribed emend! But can't get it from my chemist ( has anyone been able to?) so will have to go in early as I need to take it an hour before chemo....
on another positive, he told me he will reduce the f and the c ( e was already reduced) he didn't see why it wasn't already....so I am hoping and praying that cycle 2 will feel less aggressive.....will have to wait and see.....
good of luck to everyone on here, and remember I still love you all xxxxx
day 5 post chemo was my worse day too, I just wanted to tell the world and his wife to " fec off" it was truly a vile time....it does get better.....my over riding side effect has been fatigue, to the point I absolutely have to make myself do simple takes....
yes...murderers.....give them all the strongest dose of chemo...for 12 cycles...that would sort em out!
Just to say thank you for the hugs today❤. Apart from getting upset by hair loss, I'm having a fairly crap day. In other words, my 5th day after chemo which I am going to call Wobbly Wednesday from this day forward, 'cos I haven't got the energy to do much, other than catch up with a few emails and chill out on my settee🛋. I've also signed the knife crime petition. If it was up to me I would lock the knife murderers up and throw away the key🔐. Take care each and everyone of you. xxx
I keep having dreams about hair loss and waking up to a pillow full of hair. Ive just tied some of mine up as its so windy and I cant see where I am going and I was terrified of pulling too hard in case it all came out....
Yup. I'm steeling myself for it happening. In a way, because I've already had it cut super short and don't really like the haircut at all, I reckon I can cope with it going, if it decides to. I feel like I've already lost my lovely hair....
But I'd like to keep coldcapping if I can as they say it grows back stronger....
Yep! Completely with you on this one. After washing my hair last Friday I put things off until today, and yes, absolutely I had visions of it all sliding away🏂. Unfortunately rather a lot departed this morning which almost drove me to tears. What stopped me was to remind myself that my hair will grow back and that my body needs the chemo to help it fight this bc.
I love Nina. This is a good checklist and it makes me smile.
Great voice 🤩
Oh I hate showering now... got to be so gentle and it takes ages and then you can’t dry your hair and got to moisturise and all sorts... but my hair gets greasy so I also hate what it looks like when I’m leaving it 😞
I’m only washing it every 4/5 days if I washed it every day I’d never get anything else done and never be able to leave the house with wet hair! Not lost any from my head yet though. Don’t suppose that’s to do with not washing it. Let’s be positive my hair gets too greasy to be matted! 😂
I love my daily morning shower and I hated it when I wasn’t allowed to stick my head under the shower head after my first 2 operations. I have been washing my hair with shampoo and conditioner daily since chemo. I went to my son’s parents evening yesterday with a beanie on my head and it was so hot in the building the beanie had to come off. My son laughed and said ‘Mum your hair is matted’ and he tried to gently fluff my hair up for me with his fingers.
So if you had to choose: hot under a beanie or ‘the matted hair look’ what would you pick ?
I went for the matted hair look.
My good friend Julie said : ‘Loose all your hair or grow a moustache ? What would you choose?’
We both went for the hair loss.
It does grow back after treatment.
And on a much lighter note , I just had a shower and very gingerly washed my hair. Does anyone else panic it's all just going to rinse off completely like when you immac your legs??? 😄
Thankfully, still mostly there for now....