Oh Sika, you poor thing 😞
I don't normally take my temperature, but after my last chemo with an infection I did and found that it mostly hovered around 37.4ish the week after chemo, but I didn't have chills I just felt a bit rough. Taking paracetamol brought my temperature down and as I didn't feel bad I didn't bother to go and get checked anywhere. I had to have a blood test before going on holiday, which was taken 6 days after chemo, and my neuts count was 0.92 which I was told wasn't too bad! Not sure if that helps you or not I'm afraid.
Hang in there, you've got one more chemo to go - you can do it!
Day 5 after tax2. Went into hospital today as temp was 38.3 and I had chills. Not neutropenic so sent home with antibiotics. Temp still up at 38.5. They said to go back in tomorrow if temp is up as I may be neutropenic by then. do others go into hospital all the time? or am I just being silly and checking my temp too much? I don't know what to do. Fever is making me feel ill and i don't even know if I should take paracetamol? I am tempted this time just to stay home. If I am neutropenia then I may as well be neutropenic at home? If I didn't go in I'd never know my wbc ... I am assuming that is what other people do?
Sika - just one more to go! Whoopeee 🙂
You must be so relieved to be counting them off despite all the horrors you are experiencing. Look after yourself, keep an eye on that temperature, and let us know when you are on the up again.
Mandyj, I am really pleased you came to the decision you did. I liked jackster's directness too. And I agree with luvvie that the decision you have made does show bravery. You will get through this Mandyj. Hugs!
I was planning to write properly and reply to everyone's posts but finding it hard typing on the iPad, being day 3 after second tax. Just one more to go after this! The pain is starting, and my mood is plummeting so preparing to ride things out yet again. Temp was 37.6 before but it's dropped again. Heart rate a million beats a minute. I just don't want to end up hospital again. Argh the autocorrect is bugging me, going to go for now and hoping I can write properly soon. Love to all.
Thanks June x. Im sorry that your mum's not around for you at this time BUT while Im not overly religious, Im sure that the power of a mothers love would mean that while she's not here, she is definately looking out for you in her own way.
I just want to say you girls are amazing and my heart goes out to you all especiall you young ones as you really shouldnt be going through at this time of your lives.
I had my 2nd TAX treatment yesterday, so 5 chemos down, and 1 more to go. Apart from the other SE I have noticed that TAX tends to bring on moments of depression (like pre-mensual misery) and that accompanied with copulus amounts of hot flushes leads me to believe that this chemo drives us more into a menopauseal state (hopefully for you younger one's this will be temporary state).
This is part of our ongoing battle with this treatment like Sika and others have said, we cant trust our judgement at this time so we need to be there for each other. Combine our strength xx
jackster50 - give your Mum a big hug from me too because she sounds in touch with the real you despite her own situation, bless her heart. Mums are the best. ♥ (I haven't got mine around to hug or else I would hug my own.)
I'm sure your children and your family and your friends are the best too... but we end up trying to protect them don't we. Mums see through it all.
Good luck with getting the constipation sorted. That should reduce the tummy cramps, and ease some aches. Take some anti sickness tablets, and wash out your mouth with a gentle rinse to ease the ulcer pain. Then relax with a hot water bottle and be nice to yourself for a bit. You are doing great despite it all.
After a sleepness night of stomach cramps, constipation with two or three episodes of being sick in toilet, my children came down for breakfast and seeing me in the kitchen making a cup of tea, they asked how you feeling mum. I replied with a big smile "IM FINE"
Mouth so sore with ulcers and slimy taste in my mouth with eyes streaming due to wearing eye liner with no eyelashes. My sisters and I went out for a meal. How you feeling Jackie, my sisters asked ? I replied with a big smile "I FEEL FINE"
Bump into a couple of friends I have not seen this last 6 months, since my diagnosis, and they greet me with "Gosh you look really great"- "Thank you", I replied, "I FEEL FINE".
Go round to see my mum, who at 75 has been in hospital after suffering a nervous breakdown and has just returned home. Took one look at me, gives me a big hug and says, "you look awful, you must be feeling bad? I replied, "Thanks Mum".
I was sent this and feel we all need to hear it Life is crazy, and totally unpredictable... It's going to push you over, kick you while you're down and hit you when you try to get back up. Not everything can beat you. Things are going to change you, But you get to choose which ones you let change you. Listen to your heart, Follow your dreams, And let no one tell you what you're capable of. Push the limits, Bend the rules, And enjoy every minute of it. Laugh at everything, Live for as long as you can. Love all, But trust none. Believe in yourself, And never lose faith in others Settle for nothing but only the best, And give 110% in everything you do. Take risks, Live on the edge, Yet stay safe, And cherish every moment of it. Life is a gift, Appreciate all the rewards, And jump on every opportunity. Not everyone's going to love you But who needs them anyways. Challenge everything, And fight for what you believe. Back down to nothing, But give in to the little things in life, After all, that is what makes you. Forget the unnecessary, But remember everything, Bring it with you everywhere you go. Learn something new, And appreciate criticism. Hate nothing, But dislike what you want. Never forget where you came from, And always remember where you are going. Live Life to its fullest, And have a reason for everything, Even if it's totally insane. Find Your purpose in life, and Live it!
All I can say that your onc is totally unprofessional, to ans a phone in one if the most intense consultations out the its unacceptable, I see my onc or nurse pract before every treatment and I have lovely ones so can't imagine how hard it must be to be OK t be supported, ask your breast nurse to come to apt or a Macmillan respesentative?
Swoot am so glad you went way hike you had a nice time,
Mandy, Luvvie, June hike your strive effects are less,
Jackstar what a lovely message,
Sorry if not mentioned anyone, but love and hugs to everyone, I feel we need it atm
Am sorry not been able to reply have been very bad with the last treatment. I must admit the night after my last dose was the worst I had, as I had an ear infection, projectile vomit and to top it off diarrhoea, I sat there crying admittedly on the toilet while vomiting in the bath and said to my partner Tony that I could not cope anymore, I was all set in my own head that I couldn't carryon. But he then stood with me with tears running down his face and said that he couldn't bear to be without me, so if a small amount of illness for a short time gave him more time with me then surely it was worth it. I wobbled most people do. I was never given an option as I had grade 3 and I was 30, but I would have asked for it anyway. I kNow it's pants but promise you or will be worth it.
Thanks again ladies.
My chemo nurse says most people have a wobbly at some point during treatment. Especially at this stage where you are fed up of the side effects, the sore mouth, constipation. Not feeling like a woman, let alone looking like one! Her words were 'its short term pain for long term gain'. Very true. She also said if I have a million more wobblies before my next dose just to call her. I promise not to.
Love to all you wonderful people.
Like Luvvie I am adding to this post late on as only just seen it. Good decision mandyj (Us mandys are stubborn creatures!) I am at a similar starting point to you and Luvvie in that the chemo was borderline for me. A small grade 2 tumour, not in the lymph and Im young (I just dont look it anymore!) I have had to chose the most proactive treatment all along. No other choice for me. I was scared they would say no chemo and I knew I "wanted" it as much as anyone can want this damn poison. I also chose a bilateral mastectomy for the same reasons. the fact is im terrified of the whole thing. My mum had breast cancer and died when she was 32. (I was just 9 and my sister was 5) I have lived in fear of getting b.c my whole life, as has my sister and weve both had it. When my sister was diagnosed 3 yrs ago (age 35) her reaction was similar to mine and some people thought she was maybe going over the top with her treatment, but I certainly didnt!
Since making the decisions I have I have never once regreted them. I hate the chemo, I hate the effect its having on my life and those I love but at no point have I thought I want it to stop. Im just terrified! i look at my breasts now Im not keen on them without clothes on and hate the fact that there is no sensation there and can admit the decisions I have made are partially based on fear, but I still dont regret it. However unpleasant this makes us feel weve got to think of the end result.
The percentages dont matter to me too much as I dont feel they actaully "mean" much but Im happy to have them as stacked in my direction as possible. I have 3 children who I want to see grow up and be there for as long as possible!
Sika I have seen my onc prior to starting the chemo twice after the first one and after the third. The second appt I met a man who I guess was her registrar who I couldnt have discussed anything with properly as without being rude his English just wasnt all that good. After the thirs one I met the ANP who was fab and chatty etc. I would seriously consider a change of DR if you think thats going to help. Why not?
i agree June that nobody knows what lies ahead and thats what I've struggled with coming to terms with, the fact that after all of this theres still no guarantee, but then nobody has that do they? Were all just trying to get as close to our guarentee as we can do.
I agree luvvie bravery doesnt come into it, however your survival instinct does. You could almost argue that the lady i have heard about who has chosen no chemo and just eating healthily is braver if you wanted to.
Swoot hope your hol has been fun.
Big hugs to everyone going through this
Mandy (mid!) xxx
Hi Mandyj, I've come to this a bit late.... But I'm glad you've reached a decision.
For what its wotrth, its the same decision I would've reached.
My diagnosis and prognosis is very similar to yours. My lumps a bit bigger (2.1 cm, taking it just over the 2cm 'boundary) and my nodes were clear nodes. I was borderline for chemo too. I even underwent a clinical trial called Oncotype DX to help see if chemo would benefit me. The results were borderline!
I practically begged my oncologist to let me have the chemo. I'm quite a risk adverse person and just need to know that I've done everything I can to avoid it coming back. My boys faces, when we told them i had cancer, did that for me.
BUT...... I've had moments when I questioned what I'm doing too. I've never reached the stage when the thoughts have started to become a decision making process.... But they are there. Especially in the week following treatment.
The others are right. Chemo is as much a mental challenge as a physical one. More so as you progress, I think, as it seems to get harder...
I'm really pleased to hear your going to dig deep and have the last 2 chemos. My second TAX (I'm having 5 of them) was really easy, so maybe yours will be the same:-)
I hate it when people say i'm 'brave' or ' inspirational' .... I'm just doing what I have to do to get though this. Like I have a choice?!?
But sometimes, we might be faced with a dilemma or decision that does call for us to be brave. I think you've done just that Mandy.
Spoke to my lovely chemo nurse and she said that 6 doses are the gold standard of treatment and if she was in my shoes she would have it. She does not want to see me back in years to come regretting my decision to stop. She told me to sleep on it another night and ring her in the morning. I will do it. I am a stronger person than that. I am stubborn and don,t like things to beat me. I have to remind myself of that dreadful moment when they told me I had cancer and know that I never want to hear that again.
June22 thanks for your post. The 91% thing was from the adjuvant online stuff that the onc does. With my type of cancer and age I had an 86% chance of survival after ten years with the surgery alone. With chemo it bumped me up to 91% and then this does not even add radiotherapy and tamoxifen into the equation. The onc practically shrugged his shoulders and said you will be cured (but not in those exact words, they never use cured!) So again, this prompts my common sense brain to carry on with the chemo. If you girls can all do it then so will I. All for one as they say.
Sika - I met my Senior Oncologist briefly on the first meeting after discussing everything with the registrar. (I assume he works under the Senior Oncologist.) he just introduced himself and checked I fully understood the process, why it was recommended, and let me ask any questions.
The second meeting I was seen by a different oncologist who was covering for the registrar - so he had my notes but didn't really know my case. he was an experienced Oncology doctor, but didn't know my particular case.
After that, I was back to my usual Dr/registrar for the next meeting, and he knows more about me and answered my questions clearly. I quite like him, and I realise I am fortunate in this.
I see him a few days before my next treatment is due - before every treatment - so once every three weeks, and have my bloods taken on the same day. I get weighed, and my height measured! No one checks my blood pressure, temperature or heart rate. (Yet I am supposed to have slightly high blood pressure!)
I thought I was to have a chest x-ray at the beginning too, but that never happened either! I guess as the tumor had not gone into the lymph glands they assume no secondaries, so no x-ray is done! I might ask about it if I remember.
As I go through my weeks after treatment, I write a list of side effects and the day they happen, so that I have notes for the next oncology meeting. If not - I would forget everything I went through because my mind is still muddled!
I think your oncologist should have his phone on vibration only, or off, and only check it between consultations. Maybe... and it is a big maybe, there was a patient he was waiting to hear about, and it was important he responded... but that should have been explained to you and apologised for.
If you are not up to going to work tomorrow - don't go. Simple as that... you can even say I said you weren't allowed in and I'll write you a sick note
You are not a super-hero, and they WILL manage without you. You need to be kinder to yourself, realise you are quite weak and vulnerable, and rest.
But that doesn't mean you need to stay isolated at home. That isn't good for you either.
Could you visit some good friends for a cuppa and a chat? Or attend a gentle day course, or craft session to get you out of the house for some company and stimulation? Or maybe phone Bosom Buddies and ask if there is a support group near your home. http://www.bosombuddiesuk.com/
Meeting with people who understand how frail you may be feeling if you meet up socially - who have been through the same thing - might help break your 'staying at home' routine, and give some structure to your long days of SE's. It is just a thought.... 🙂
Take care, and look after yourself.
EDIT : That Bosom Buddies Charity doesn't seem to link to support groups. In my city, Bosom Buddies are a network of volunteers that offer support and friendship to fellow breast cancer patients. Ask if there is something similar in your area, as the website I linked to might be aiming for something different, but going by the same name.
MandyJ - I intended to respond sooner, but wasn't sure how to respond without hurting feelings that are already delicate. I think others have said it better than I could, and I agree with Sika and Jackster.
I wasn't sure how you had found the 91% survival rate you mentioned. I have read that for my kind of cancer there is a 75% survival rate over three years.... so I intend to be in that part of the survivor statistics and will do all I can to get rid of any remaining cancer cells... I too am frightened, and sometimes say to myself..."I don't think I can do this" but somehow another day goes by and then I manage a bit better, and it seems like I might be able to do it after all.
I think you have had a particularly horrible time, and I can understand your feelings, especially when your emotions are all messed up by chemo. This stuff messes with our brains, our hearts, and perhaps our souls! We watch our family stress, andregular routines of our lives start to crumble... but together we can support you with our understanding and words of comfort on the bad days, and your family and friends can be there for the physical support. You can do it... but it needs to be your decision in the end for whatever reasons are dear to you.
I am glad you have changed your mind as I want you to have no future regrets. None of us know what lies ahead... but if you can make the chance of getting another cancer as small a chance as it can be... go for it.
I wish you all the best with your next session, and hope they can help you lessen the horrid side effects so that you aren't feeling so low again. Maybe your own GP could help with something to lift your spirits whilst all this is ahappening. It is hardly surprising we get depressed!
What a great decision mandyj (y) I'm so glad. My little boy has just turned 1 and he is a great motivator. Hope you hear back from the chemo nurses soon - we'll be here after the last 2 doses of Tax, don't worry.
Jackster50 your post made me cry. Today I had made the decision not to have any more chemo. I had spoken to the oncs secretary and the chemo nurses to say I was not coming again. Since reading what you put I am waiting for the chemo nurses to call me back as I want to tell them I will continue. I think all the pain and heartburn made me think I cannot do this. Once the human feelings come back you see that you can dig deep and get through 2 more. I have been reading the survival statistics for younger women with breast cancer and I realised that I need to de everything for my little boy to try and cure this forever. Thank you again Sika and Jackster50 for your support. it has made all the difference.
Im sure like you, as a mum there have been times when I have had to be cruel to be kind when it comes to my children. From watching the nurse give my babies their first immunisation injection; forcing my 11 year old to eat solids after having his tonsils out; holding my son's head when he was violently sick in the toliet due to his first drink session.
As a mum we hate it when our children are ill or unhappy and while more than often we cant make their pain disappear we can provide them with love and support - we are strong for them and do whatever it takes to help them get better.
If you where a child going through this and I was your mum I wouldnt be allowing you to stop a treatment that in the long term would make you better and would ensure that you were alive to enjoy all the wonderful experiences that the future holds.
I know its tough and things seem dark at the moment but the end is insight - dig deep, take a big breath and go for it xx
Hi everyone, I was just popping on to let you know that I was allowed on holiday and that we're having a lovely time up in Scotland, when I saw all the recent comments. I do hope everyone is as ok as they can be, but it sounds like some are going through additional worry.
Sika - I do not think that checking an iPhone during an appointment is at all professional. I would not do that if I was in a meeting at work, and I also wouldn't do it when talking to a friend about something serious. I'm shocked on your behalf. I see my onc the day before each of my chemos, but that's because I haven't had surgery yet (was breast feeding when I found out) so they need to keep an eye on me to make sure chemo is doing its job. I have seen the senior onc once and a less senior one 3 times during sessions. They called in everyone when deciding if I could come on hol, and gave me an extra appointment. Your experience sounds very different. Are you sure you wouldn't like to take someone with you? My husband comes to each onc appointment with me and makes sure I ask all the questions I've been asking him over the 3 weeks - and I write all my questions down during the weeks as I think of them, however silly, and write their answers down too.
I hope you get on ok with your work visit too. It's natural to be nervous and I hope they only want what is best for you. I have been working through my treatment and my colleagues and bosses have been very understanding. I work 3 days a week and every middle week from home. I'm thinking of changing when I go to work based on how I was after my first Tax though, as I didn't think I should be there! Let us know how you get on.
And it's not surprising we feel like the chemo is killing us - it kind of is. It's evil stuff. I wouldn't wish it on anyone else. I think that if they say cancer affects 1 in 3 (shocking stats) then hopefully if I've had to go through it, someone else I care about won't have to.
Mandyj - you poor thing. I think that's we're at the same stage in our chemo treatment (I've done 3 FEC and 1 Tax) and I'm so sorry to hear you're feeling like that. As sika says, whatever you decide will be right for you, but I echo her advice to think about it when you're later in your post-Tax recovery - once you feel a bit less foggy. Looking back on my first Tax from the end of my middle week I can see how 'off' I was. It was different to the FEC because on that I was fine after about 6 days. With the Tax I felt rubbish for over a week and even then wouldn't trust myself 100%. I asked for a lot of help from my family. Luckily my parents live close by and are brilliant when I call them saying I can't cope. Do you have anyone else you can talk it through with? Whatever you decide we'll all be here 🙂
Thanks for your reply Sika. I will definately get all the info before I make a decision. You are right about how it makes you feel and think. I hope you do better with your next dose. Thinking of you.
Thank you June, and Luvvie, for your kind and understanding responses. Part of me is scared that he will be grumpy with me for wanting to swap at all. But, one of my complaints was that he kept checking his iphone when he got messages during my consultation, and once answered a call which didn't seem at all urgent ... perhaps he will be told that (the registrar and nurse both seemed a bit shocked he did this) and that sort of thing he could stop. The other thing I worry about is that I will be too scared to say anything and he will be over-accomodating inviting me to talk and I won't have any questions or anything. Yes, I could take someone, but I don't feel right doing that. I think I need to start making a list and start it now in these couple of less-foggy days before my 5th dose.
How often do others see their onc? I only see mine every 2nd dose - so before the 2nd, 4th and last. Seems odd I don't see him after my first Tax so he can see how I reacted to it. And that there are no tests done on my heart or BP or anything. I'm so weak, tired, and breathless.
I have to go into work tomorrow. I am nervous about it. First I may need to take the stairs if the lift is broken and I am not sure I will make it and/or people will see me crawling up. Second, I look like shite. My eyebrows are all thin and patchy and my eyelashes all short and thin and my skin is distinctly greyish and I'm puffy and I'm sick of scarves that all make me look sicker (never got a wig - couldn't find one that didn't look like a wig and couldn't afford one and I thought I'd be fine with scarves but I am not now). Third, I'm not sure I will be able to manage the work and talking I am meant to do. I've just locked myself up in my home alone for weeks and going out in the world, amongst people and life, is scary.
Mandyj, first - loads of hugs. Second - the nurse is right - whatever you decide will be right for you. Take the time you have to think over your options - test each option out in your mind and find which one makes you feel best. It sounds to me like you are already pretty set on stopping.
The only thing I would suggest is to try take into account that right at this moment the Tax is doing all sorts of things to your body and mind. I think the emotional carnage caused by the Tax, in my second week, was one of the worst side-effects. I felt completely and utterly miserable and cried for the best part of three days. This was when I got myself in a state about my oncologist and wanting to change and all sorts. It is only over the last few days that I can recognise how muddled my thinking was and how much emotional pain I was in then (not that I'm 'normal' now, but I am better - right at the end of my 3 week cycle). I'm just wondering whether you want to take into account the muddled mind that Tax may be causing?
So, do take the time you have to think through what you want to do, find out as much as you can or want to, and weigh up each of your options. Ultimately, you just have to be happy with what you decide. One of the options will put you more at ease than the others.
[ I'm with you on the feeling scared stuff too. I'm terrified of my next Tax dose. Not only the fact that I had a severe reaction to it the first time, but that it hammered my body and mind so much afterwards. It is scary. And horrible. And makes you feel completely powerless and out of control. I'm in the 'high risk' of recurrence/death group though and for me the fear of leaving my daughter and not having done everything I could to live is greater than the fear of the treatment. Although, at the same time I do fear that they won't get on top of my reaction in time, if it happened again, and the chemo itself will kill me. Argh. Paranoia. Silly.]
Girls I am in a quandry!
I am seriously considering stopping my chemo after 4 doses. The Tax has made me feel so ill and the thought of putting it in my body again scares me. Onc says he can reduce it or I can go back on FEC but to be honest I just want to stop it all and take control over my life again.
I had a chat with a nurse on the Macmillan helpline this morning who said that the decision would be the right one for me whatever I decided.
I had a grade 2 IDC with one positive lymph node. It was 18mm and had not spread anywhere else. They are happy that it is gone and that chemo was an insurance policy so, for the sake of a couple of percent risk I think I will take my chances. I have been given a 91% survival rate without adding radiotherapy into the equation. I probably have less odds every time i cross the road! Nothing is certain in life and people still get cancer again after all the doses. I am still happy to have the radio and Tamoxifen but right now I have had enough. I cannot live the rest of my days in fear of this disease as we do not know what will happen.
Spoke with my onc about it and he said 6 doses are better than 3! Not helping there much. He was not set against it and I have a couple of weeks to decide before next dose is due. I have looked through old posts/threads on here of people feeling the same but they are no longer on here now to tell you what decision they made.
Sorry for the rambling, my head is everywhere.
Sounds like we're all suffering a bit:-(
Mandyj your experience must have been so frightening.
I suffer with bone pain with TAX. I've never had chest pain though. I've found the pain varies, my first session it was really bad..... Even my toes and teeth hurt. Second time it was mlid and this time it was bad again. I take co-codomol and ibuprofen..... But am not really sure if they help too much.
I've not found TAX too bad, but then I'm comparing it to my horrific FEC experience. However, I've been well and truly hit by the 'TAX truck' this time. I had chemo on Weds, went downhill fast on Friday and didn't get out of bed all weekend:-( Seem to be feeling a bit better now though. Just as well because one of my boys has started his half term break today!
Mandymid, I'm impressed with you looking into the cycle ride.... I'd love to start thinking about a half marathon next year (used to run a few) but I can't contemplate it. Then again, perhaps it's the goal I need to set myself without getting too stressed if its looking unlikely nearer the time?
Victoria, good for you getting involved in the charity stuff too:-)
Sika, I too am taking the 'easy' route with lots of things. I just don't have the energy to put up a fight. It's so hard when everything zaps you, I thnk the right thing to do is save your strength for the things that really matter.
June22, you are doing a fantastic job of keeping us all upbeat and jogging along... Thank you:-) your story about your tumble (whilst not funny) did make me smile... That as the sort of thing I would do! Glad to hear you weren't hurt, this chemo really does take our feet from under us:-(
Having not been out of the house since last Tuesday, I'm off to take my son to get his hair cut. He was crying with laughter last night as we role played a scene at the hairdressers....... I went in wearing my wig, they cut it..... I went to the toilet, took my wig off and came out in tears realising they'd cut all my hair off... if it wasn't so cold here today, I might try it!
Hope you all have a good day, and the side effects are chased away:-)
hope I haven't forgotten to mention anyone in my post too xxx
Sika - I can totally understand.
Everything seems too much trouble when we are going through chemo, and I too find myself taking the simplest option for stuff lately rather than request changes, looking into alternatives or demanding attention.
Maybe taking someone with you to your ONC appointments would allow another voice on your side to insist on answers and take note of responses for you whilst your emotions are so delicate?
Perhaps having even suggested a different oncologist, he will take gentler steps with you and rethink his approach! I am sure his job is to manage the treatment and doses and monitor your cells, but it is also to recognise how individuals are reacting, and how they can be helped through the treatment. And... we all tolerate pain differently, so some will feel it worse than others.
Pain isn't easy to deal with on top of the weakness and sickness, and mind muddles. Nurses told me to take pain killing medication as soon as a hint of pain began because it is easier to deal with it before it gets too bad, rather than once it is full blown pain. Good luck at getting the pain down to a manageable level. And be kind to yourself... your emotional state is a reflection of how poorly you have been feeling. Remember - you will come through this and return to a clear mind and stable emotions.
When it is all over with and you are feeling like yourself again, maybe then is the time to give a feedback report to the hospital patients support unit regarding how your treatment could have been improved. But I can understand too that by then you might just want to forget it all.
Be kind to yourself, you are doing so well despite such horrible things to cope with. 🙂
Oh Mandyj, how frightening. Hugs! I hope the pain has lessened nowand or you have managed to get on top of the pain. It's good you have an explanation for it now. Are you on the injections too? I had some chest pain with my tax, but not as bad as yours sounded. It was actually worse in the second week, but I suspect that had more to do with whatever the infection was that had me in hospital. I also had a very fast heart rate while in hospital - for a couple of days it was over 100 while doing nothing but lying in a hospital bed. No one seemed at all concerned though - have others noted a faster heartrate while on tax? Perhaps it was just to do with my infection, again?
Anyway, I think in general, that oncs may not know how much tax can hurt? Seems to be my experience anyway.
Hugs back to you Victoria. Nice that you are getting nvolved with the charity work
Mandymid, the charity cycle in Cuba sounds incredible - you can do it, and what a wonderful thing to look forward to!
Ella, hope you are beginning to feel better now. Good to know about the in effectiveness of the vits aNd beet root!
Thank you June, and others re my oncologist. I don't think I can complain. I completely lost it when in hospital when my onc spent 14 seconds with me and completely dismissed my questions about the pain and spent hours crying. I told the nurse I wanted to swap oncs and the next day the onc registrar came to see me. He has better interpersonal skils but still talks over me ... Anyway he started talking about swapping and maybe I could talk to the onc about what my issues were but. The whole conversation just made me cry again ... (I had a particularly weepy time in hospital - cried almost non- stop for a couple ofdays). Anyway, I said I just wanted a new onc which they arranged. But this would mean a change to my days, including infusions on Monday which would mean blood tests on Friday which is no good as my levels are low and everything just confused me so I said I would stay with the original onc. Who knows - the new one could have been worse? I am sure that my problems are just me being sensitive and fussy and others would like my onc. I just like to know as much information as I can, and want to have my experiences of pain and discomfort taken seriously. I can't really see what work he is actually doing.
Have to go now as my battery is about to run out , I may try write about this properly later on ... I just don't trust my mind at the moment basically.
Spent my first afternoon in A+E yesterday as I had terrible chest pain. Never had to call 999 for myself before! I did have the first dose of Tax last Wednesday and the pain turned out to be the bone and muscle pain alongside heartburn. It scared me though because nothing was shifting it. I don't think I took enough preventative pain killers for the bone pain. To be honest i was not expecting it in my rib cage! Anyone else had rib and chest pain with the Tax?
Can't explain how you made me feel with your kind words, especially as I'm struggling so much ATM., def is an individual experience everyone is different,
June sorry to hear about your fall hope you didn't hurt yourself,
Sika what a shame the onc is not nice of all the times you need some help it is now,
Ella I like the sound of the red wine I got my iron boost last week with pint of Guinness lol, made me feel normal for a moment lol,
Mandy its always good to look forward, I'm trying to get more actively involved with another charity called coppafeel, they focus in raising awareness in younger women. I have a meeting on the 22 Nov at there head office in London.
Thats made me laugh...sorry!
Stick to that red wine girl!!
I'll stay confused about eh supplements shall i?
I have a good friend who's a G.P and another whos a pathologist who actually did my pathology on my (double) mastectomy. I try not to dwell too much on that if you get my gist!! Anyway I have asked both of them the W.C.C question this week. the GP friend said rest! Poss the one thing I dont do well with 3 kids and the pathologist said absolutely nothing you can do. He said chemo attacks bone marrow that produces white cells. Some are more sensitive than others. The way I kind of see it is its the chemo doing what it should (kind of) plus if it was dietry my HB would not be as good as it is. Interesting they went ahead Ellaboo as mine on Thurs were 1.4 but said wait til Monday meaning when my sister and nephews are here I'll be pooped!
Sika I would complain to pals about your oncologist. Sounds awful. How dare he make you feel that way?
June...ouch! Dont try Ellaboos red wine recommendation!! I must admit I know what you mean as sometimes I feel like everything is an effort. Last time after chemo (prob about a wk later) I walked round our local lake. I was puffing like a steam engine, I have been several times since and it gets better each time! I cant work out if Im really that unfit or whether its the chemo attacking everything.
Keep looking at a 400km charity cycle ride around Cuba in spring 2014, thinking dare I register and then may find I cant get fit enough for then but I really want a challenge to look forward to. Its the women vs cancer thing. Also The fund raising will be a challenge but fun!?!
Big hugs to all
Just an update on the multi vits/remedy tip I was given - after taking all those extras and beetroot, wheatgrass... My neutraphils and white bloods were down like last time! Had had the big injection 24 hours after 2nd treatment but unsure that made any difference either. Neutraphils only 1.1 but they decided to go ahead anyway as I was otherwise healthy and no side effects. So had 3rd FEC on Weds but have felt the worst so far.... Someone told me today that the 3rd and 4th were worst but then your body adjusts so it should be upward from there. However, we all seem to have such different experiences that I think there is no 'definite' way we should feel.
Anyway, will be keeping the £40 I spent on vitamins and revolting beetroot and spending it on a very nice bottle of red wine this month haha!
Good luck to everyone and roll on Christmas... xxxx
Sika - welcome back. So glad you are home again, though it sounds like you are still quite poorly and need to take special care of yourself!
Well done on getting those neutrophils up so high again though! You get a smiley award for that - 🙂
Your Oncologist sounds horrid! Do you get questionnaires sent to ask how you feel you have been treated in hospital? I did, and I filled it out honestly when I felt there had been too many admin errors over my surgery/pre-op, and delays of more than an hour without any explanation when seeing specialists.
I think there is also a confidential Patients feedback group who are happy to hear concerns and address them if possible. Maybe there is something like that you could use? Though I know... you probably don't feel like complaining when going through treatments, and I understand - I would feel the same.
Hang in there, and look after yourself... you are a bit further along the journey now, and each step is closer to the end of the tunnel.
Luvvie, sorry to hear you had the scare with the bloods. But great to hear your onc's reassurance that it is 'just' the poison doing its thing.
Mandy, how frustrating about the delay. I am willing your WBC to go up and up and up! I hope you are feeling okay when your family arrive.
Swoot I hope you got to go on holiday?
Victoria, I hope you start feeling better soon - from side effects and the ear infection. I hope your chemo nurse actually meant 'downhill' in a good way - in that you are over the halfway 'hump' and are now rolling down the other side towards the end of all this treatment?
Aw June, sorry about the tumble. I'm also finding 'getting up' to be very hard. I was in a shop yesterday and made the mistake of crouching down to look at things on the bottom shelf. I had to call my daughter over to pull me up again! Definitely no dancing!
I got out of hospital a few days ago. They never found the source of the infection. Anyway, after being really low (0.2), my neutrophil count then just shot up overnight from 0.6 to 15!! So, the injections did their job, eventually. I am assuming they will stay high now? I'm also pain-free now. It was so intense and I felt so ill that I was convinced it was all permanent. None of the doctors seemed to understand what I meant about the shooting pains I felt in the tops of my feet and up to my knees (up to hips on the first day). They suggested it was like pins and needles but it wasn't that (I know because I had that pain as well). They just kept saying take ibuprofen - but that doesn't touch it. Anyway, the Macmillan nurse who spoke to me offered the kind of advice I would have expected from the oncologist. Next time I will just take ibuprofen and paracetomol and oromorph on a regular basis, along with high strength laxatives. I just need to get through the agonising days (days 4-7) then I will be okay. I wish my onc was as supportive and lovely as my surgeon. My onc makes me feel like a polluted body and a whinger and a drain on his time.
I still feel incredibly weak though. And my temperature is still slightly up most of the time (between 37.2 and 37.6). Feel like I have a cold without the usual cold symptoms, if that makes sense. Just riding it out until the next dose. Already nervous about that because of the reaction last time. Other people get taken off TAX if they react like that - how come I didn't?
TigersGirlie - that was a nice jolly message considering you aren't feeling too bright after chemo 4 🙂
Congrats on seeing another chemo session through, and good luck for fewer side effects very soon.
Nice of the nurse to let you know it is all downhill now ...ha ha... love the idea of the special cakes! But really we love our chemo nurses don't we? They do put up with us moaning about constipation, rashes, aches, pains, doctors, and all the rest. It would be wonderful for them if we could turn up and say we feel great, and have been doing amazing things... but that ain't gonna happen.
Today, I stumbled on a bit of pavement and ended up sat on the ground as I couldn't correct myself, and then I couldn't stand up. I just didn't have the strength left in my legs to push! I felt a right stupid thing. I sat there and laughed for a moment, then rolled over and crawled to my knees to pull myself up from a wall... not a pretty view!
It made me realise just how weak I am... though it is day 7 after FEC #3, so I suppose my red cells might be low.
Just as well I am not hoping to dance away the weekend 🙂
Hope everyone has a good day today... and for those feeling poorly, know we all think of you and wish you better.
Oh no where have you all been, you all sound Like you have been poorly,
So sorry swoot, June, Mandy,luvvie you are having a very rough time.
I had fec x 4 on Wed oh dear do I nor feel good, and chemo nurse said its downhill from here, oh well I will use the hope that I will be done for Christmas!!
:-) Luvvie glad your not delayed
Mandy hope your well enough to see your family when they come.
Have been in bed with treatment, Susann my treatment was decided because of my age and 0and of the grade 3 and vascular invasion, its not nice but I think about it beating this beast !!!
Hope you all feel better soon, oh and to top it of I have an ear infection!! !!
Hi Susann Welcome!
I like you have been having chemo even though seen as a "borderline" case for needing it, one small tumour 1.2 cms grade 2 no lymph involvement, but large area of high grade pre cancer seen in opposite breast (I had a bilateral mastectomy - just as well really!) my family history of b.c, my desire to be treated proactively and my young(!!) age swung it. At no point yet have I thought Ive made the wrong decision even though its not fun!
Ellaboo Thanks for the tips. Im also vegetarian but wont be going down the meat avenue partly because Im not aneamic and never have been. I find all of the herbal stuff a bit overwhelmign as I keep reading different things and end up not sure what to take so take nothing! I did have one of the kids chewy multivitamins yesterday if that counts. I eat lots of fruit and veg anyway and like you the odd thimble of red wine! I have been again this morning and my bloods are picking up but still not good enough to proceed with the chemo so it'l be mOnday now (I hope!) Which is a bit of a pain as my sister and nephews are coming over from Geneva and I'll be grotty all week!
Luvvie very glad you not delayed, ever likely some of our bloods arwe up the shoot with all this stuff!
Going to have to look into the beetroot thing. I hav only ever had it pickled and I cant stand it, so think its put me off altogether. Whats it like warm???
Keep smiling everyone
That's good news Luvvie, hope you're not feeling too bad afterwards. The oncologists and nurses do try to look after us don't they? I'm due to see my onc today after bloods yesterday to make sure my infection hasn't taken hold (thankfully I feel fine, but hope my bloods looks ok too) after last week's decision to go ahead with chemo. I'm meant to be off on holiday tomorrow, so they'll let me know whether I can or not. Fingers crossed!
I was wondering how Mandyj got on yesterday with her Tax that was delayed from last week. I remembered because I think weare going through chemo on the same sort of schedule. Hope you're doing ok Mandy, if it's any help I had my first Tax on Friday and now feel ok again. Monday and Tuesday were probably the worst days for me, where I felt really quite achy and like my head was full of cobwebs (for want of a better description).
My bloods were all over the place..... Creatinine levels caused concern, but because bilirubin levels within range onc happy to proceed?!? i tnnk about half my levels were outside or just outside normal range. My liver enzymes were through the roof, but half the levels they were last time apparently!!!! Glad I didn't know that at the time!
Onc has reviewed it all and is satisfied its all due to my body processing the poisons, and it isn't an indication of any underlying issues / damage.
Must admit, I was more an a little worried!
Good news, chemo completed and I'm now 2/3rd of the way through the chemo tunnel!
Luvvie66 - so sorry you are given this extra worry. I have no idea what this result means, but hope it is a case of easing off to allow your liver to cleanse itself. Maybe they will lessen the dose, or put it through slower with more saline! I'm only guessing here... and trying to cheer you along.
Whatever happens, it is good that they picked up in the problem and now they will be closely monitoring you throughout the rest of your treatments to ensure no long term damage is done. It is a fine balance they have to make - this chemo stuff is nasty.
Good luck with it all.
Not good news with my bloods. According to the chemo nurse who called me at 7pm "they look wrong".
i wasn't sure how to take this...... Had someone written them down 'wrong'? Was there something 'wrong' with the counts?
Turns out there are a 'couple' of really out of the range counts...... And before you ask, my neutrophils and WBC are brilliant:-)
Thats what makes it more worrying.
Apparently my creatinine levels are really really low. They are an indictation of kidney function (yikes!). I've committed a sin and googled. High levels seem to get lots of press as they indicate damage to kidneys.... Phew, mines low.
Low levels are reported less often.... Could be due to not enough protein in diet, muscle wastage, old age, chronic liver disease or pregnancy. I'm very sure none of these apply to me, Especially as levels have been normal until now. I'm hoping its just a result of chemo toxin build up, or some simple explanation like eating too much beetroot!
Chemo nurse had a call into onc to see if chemo can go ahead later today. She said she'd call back if I couldn't go ahead (but that was at 7pm). I've heard nothing so am hoping I'm ok to have it.
Im now wide awake in that high dose (for TAX) steroid sleeplessness phase. Worrying that I've got kidney damage or liver disease to add to my list of ailments:-(
I'm sure it'll be ok.......... You know how lying awake in the early hours messes with your mind.....
hi Susann, welcome aboard:-)
I'm halving chemo as a preventative measure too, it's not something I'm enjoying but I'm halway through and can see the glimmer of light at the end of he tunnel.
Ladies, guess what...... Yesterday whilst in Sainsburys I had a sudden craving for cooked beetroot.... I bought 3 packs of the stuff and had it with feta cheese for lunch. Not all 3 packs, my craving wasn't that strong!!!!! How bizarre!
I'm sorry to hear your all having trouble with neutrophils.
My WBC was low before I stared chemo. I'd just got over a bad cold so I'm not sure if that's why. I was put on 'the big injection' from the start. I do it 24 hours after chemo and it does make you ache for a few days. My neutrophil count was really high last time, so I guess it's doing what it needs to. I don't know off the single injection is more effective that the multiple ones, but it might be worth asking. It's called Neulasta.
Im having bloods done at 9am, with chemo due tomorrow.... So we'll see. Lets hope my beetroot craving wasn't because throes naughty cells needed boosting!
Hi one and all, I am tentatively joining this community as not quite fathomed how to navigate the forum threads. So excuse me if I get lost in the technology.
My own experience began on a shortbreak in Norwich early August, the lump cut short the trip with an urgent need to see my GP. I was referred, biopsied and diagnosed by 23rd August 2012, followed by surgery on 21st September to get to the verdict on October 11th. I so understand the surreal feelings, it's almost out of body, as if my brain has not quite caught up with the events that have overtaken life as I previously knew it.
My results were a mix of good and bad news, two tumours 8 mm and 12 mm, Grade 2 and Grade 3 with vascular invasion, oestrogen receptor positive, lymph nodes clear. Due to the Grade 3 tumour and the blood supply the treatment shifted to include chemo as an added insurance - if there is such a thing. I don't mind admitting, and I know from the many posts on here, that fear and dread hit me immediately. However I don't want to have any cause for regret in the future, so I am biting the bullet and handing my life over to the battle temporarily and hope to emerge next Spring. Now waiting to know when the chemo will begin, decided it is worth trying the cold cap, but looking at headgear options too in preparation. I have printed the hints and tips list for reference.
Future thoughts: I may lose weight through this, bonus; look forward to the bulbs we planted appearing next year, Christmas and New Year, not sure if we will notice them this year, hope to retrieve the holiday we had to cancel this September same time next year
Hi everyone, just thought I'd check in and see how everyone is. My treatment went ahead on Friday, and I have been OKish since, but starting to ache a bit now. Luckily my lovely husband has just made me a yummy meal and some beetroot, apple and orange juice. We concocted it before I'd seen the last few posts here, and mixed with apple and orange juice it doesn't taste too bad! Fingers crossed it does the trick, as well as my 7 days worth of injections and 'just to be on the safe side' additional bloods and appointment with the onc on Thursday...!
Sorry to hear that people are suffering, whether through the chemo or at the dentist. Sika I do hope you are feeling better and out of hospital soon. Good luck to anyone having chemo in the next few days, hang on in there - we can do it xx
Had my sore armpit lump thing checked today. Its an inter mammary lymph node/gland. It looks perfectly normal and healthy and my docs think it has just become swollen because of my cold. It's still delicate around that area as its only been 3 months since the surgery. If it has not gone in 3 to 4 weeks they will scan it again. i did get a look at my scan before my surgey so I saw my abnormal lynph nodes. There is definately a different shape and colour to this one. It looks like it should - thank god!
Had a temporary filling put in my dodgy tooth. Got to go back in Dec, after my final dose of chemo, to have it took out and filled properly - such fun! Yes, I am a Miranda fan.
Sika I cannot believe how much time you have had to spend in hopsital. You must be gutted that it has affected you so much. One day all this will be a distant memory to us all. I think we all look forward to day where we wake up feeling fit and healthy and can spend hoours shampooing and blow drying our hair!!
Bring on the Tax! (I am trying to convince myself it will be fine).
luv to you all
Ellaboo... so funny to read that beetroot juice was recommended to raise the WCC. My body craved cooked beetroot, pickled beetroot and tomatoes last chemo, and is doing the same this time!
The acid vinigar seems to freshen up the coated mouth - luckily I don't get ulcers, but instead seem to have excess saliva.
I had 3rd FEC on Friday, and today - I have spent from 11.30pm last night until around now (4pm next day) sleeping it off... felt very nauseous this morning and was wretching but managed to keep all the tablets down. I've just had a glass of water, some toast... with beetroot and tomatoes! I know - not a great sounding meal - but it can't do any harm so I am going with what my body wants.
Hi Mandy - have also had the same problem with my white cells, was delayed a week last time and even then, they were still not up really enough but they allowed me to go ahead with my second FEC. Have been doing some serious investigation into how to do it (if you ask the hospital, they say there is nothing you can do...) but have been recommended the following: Beetroot juice (truly horrid unless you really love beetroot), wheatgrass juice (have got my mum growing it for me in her conservatory and have bought a little juicer to do it, tastes like mown grass but apparently outrageously good for you and your blood cells). Am vegetarian but have started eating meat to try and keep bloods up (how desperate am I to get my chemo done?!). Also, someone post a while back about natural remedies so have taken that on board and have been taking multivits (immune booster ones), aloe vera, hemp oil, evening primrose and coenzyme Q10. Have been eating loads of veg too and drinking red wine haha! That bit's not too difficult. Have got blood test tomorrow followed by third FEC on Weds fingers crossed. Last month I had the five injection booster but this month, they gave me the one big one that you take 24 hours after your treatment. So, will wait to see if any of this works! Have always suffered with anemia so knew that my blood would be rubbish, is truly depressing when you want to get it all over with asap. Hope some of this helps and good luck xxx
Seems a few of us are having lots of extar little "issues" along the way and I suppose thats to be expected. My WCC and neutrophils wre low on Thurs when checked before my review so had to have them done this morning before my fourth dose of epirubicin. No go! In fact one of them (Ive forgot which!) was actually lower than last time! Hate the delay as I'll be at it til feb anyway but also Ive started to feel unwell prior to even getting the damn drug (obviously pschosomatic!) so have to do all that again when they decide to give me more.
Sika it doesnt seem right to me in anyway that your onc is not taking pain seriously. I dont get that at all!
Has anyone any tips for getting your white cells up a bit aside from the lenograstim of course and Ive had 5 days of that and they dont want to give me anymore at present