Darling runaway girl, that’s not acceptable that your trust is treating you like that. Please keep ???you can do this. We all have the feeling on this journey that Life is on hold during chemo, it’s unfortunately part of the journey and you still feel like you and then you look in the mirror and think who’s that? But you are still there don’t ever forget that. Call the breast cancer care Number 0808 800 600 tomorrow open 9-1 or today it’s open till 5, they have trained people and nurses for you to speak to and you can get some proper support and answers my darling. ??love you shi xx
Runaway you’ve had a really rotten run at it and a cold on top just to drag you further down. Definitely call the number, they will have advice, I’m sure they’ve seen it all before but it’s ? when you’re stuck in the mire with no control and feeling plain awful.
Karebear - some quiet thoughts with a candle and photo may help.
I’m so sorry your both having such a tough time. Sending hugs and positive thoughts and hoping you both feel less troubled tomorrow. ??
Runaway girl I am so sorry to hear you are having a rough time. I absolutely hated FEC and found each cycle really difficult. As well as very bad sickness and nausea I also found the complete lack of interest in life a real shock. Regarding the sickness Do you have a good GP? It was actually my GP that changed my sickness meds and got me on the meds for my acid reflux - you might want to try that route if the unit aren’t that responsive? My GP has responded very quickly to any niggles I have had.
Each time I though I could never do FEC again but slowly you do climb out of the dark pit and realise that you still have plenty of fire and fight left in you. For me it was usually day 11 that I could contemplate life again and hold a normal human conversation. But the truth is it does suck. But you will come through 
?
I am on T now and am really optimistic that it will be much better. I know that there will be SEs but I still feel like a human being which is a million times better than before. Hold tight we are all here to help you keep going. ???
Are you on FEC 100 runawaygirl248 ??
Hi runawaygirl, I’m another firm the October thread. I’m all FEC mine is preventative and also because I’m her2+ my reoccurrence chances are higher. I needed the chemo so that I can have herceptin which is supposed to be the magic bullet for her2+. I have wondered a few times along the way especially during first and second cycles if it was worthwhile but overall I want to give myself as much chance as possible of having many more years of good health. Not sure how old you are but I’m 50 and my oncologist keeps referring to me as young and fit so I’m taking that. I am nervous that having gone through chemo I will have an adverse reaction to the herceptin but at least I will have done all that I can.
I’m day 3 cycle 5 so can see the light at the end of the chemo tunnel. There are tough times but there are good times too. I have found this forum such a lifeline in both good and bad times. There is serious empathy and advice but also lots of silliness and laughs too.
I find getting out for even a short walk whenever I can keeps me sane as does doing small manageable jobs. Eating little and often really helps with nausea as does eating real meals cooked by other people if that’s possible. The GP might well be the way to go for anti sickness meds but keep on at your team especially at next pre chemo appointment mine were tweaked much more successfully cycle 3 and have done better the last couple of cycles.
Don’t give up, make your voice heard, it is tough but the time goes quicker than you think. Try not to look at the big picture it’s too daunting, take each day at a time. Ride out the bad ones and embrace the good.
I have seriously missed my previous life but I also very much hope to get the majority of it back. There are plenty of positive post treatment stories out there.
Sending you (((Hugs))) and ??xx
Hi ladies
Thanks for all your lovely replies, it seems we have all struggled in one way, shape or form along this chemo journey so far.
I’m on EC as our NHS trust dont use the F part anymore as rhey found it didnt have any additional benefits but not sure if that has other SE’s that you ladies have had. The Onc is looked at changing to Doxetactal for cycles 4-6 but I want the benefits outlining of why as Ive been told it will only make a 1% difference.
Im 39 Chaffinch and have been told I will also need Tamoxifen tablets for 10 years because of my age and I am ER+ and Her2-.
I have a meeting withe chemo assessment nurse on 17 Jan which my husband is also going to attend as he was appalled at how bad the nursing staff were on last Friday’s cycle 2 infusion. They were understaffed, didnt listen and shoved the meds thtough despite me saying my arm felt like it was burning and I had redness and swelling around the cannula and Epirubicin leaking around the cannulla adhesive dressing. It took the Unit main nurse to step in and stop the infusion to allow my vein to stop being so irritated. We think the quickest the drugs were IV’d has caused additional SE’s this cycle that I didnt have last cycle. Im not usually one for making a complaint but I will be making it known to the chemo assessment nurse.
Im having private therapy which I pay for so do have someone independent to chat to but I seriously had no idea or really under estimated the impact of the chemo physically and mentally. If I am to continue with chemo then the assessment team need to start listening to the side effects Im getting and offer solutions as there is no way I am having another 4 cycles feeling like I do this cycle.
I have only seen my GP once which was to sign me off work this week (Im a H&S Adviser for a construction company) and discussed rhe bladder irritation and sickness but she said that I need to get authority from the Day Unit before prescribing anything. Like going round in circles!
The Dexstamethosome steriods just dont agree with me and to feel like I dont even feel like Im in my own body is a step too far. I even struggled this cycle to hold a verbal conversation with others whilst taking the steriods as it was like I just couldn’t comprehend what was being said and had no really concentration. There must be other steriod alternatives. I know that we are usually given the cheapest meds possible but to be honest I’d quite happily pay to have meds that didnt cause the same bad side effects.
I know have zero taste after having a chalky / cardboard taste in my mouth for the last 4 days so all food tastes bland now. Im eating 3 good meals a day plus healthy snacks inbetween so getting the protein and nutients etc. but have also lost 5lbs since last Friday so not sure what thats all about!
Like I say, I am unfortunately on a rant and bad/low day today and the support from all you ladies and hearing your own journeys is invaluable…I do appreciate it.
Jo xx
Just wanted to send you huge cyber hugs Jo. I think we are on the same day & cycle. I had felt wretched but today feeling like I’ve crawled out of the mental/physical hole. I so sympathise with you and hope so much that tomorrow is easier. I had dexamethasone and hydrocortisone (because of the reaction) and had the most awful shakiness, sweats, even tears. I felt like I lost my positivity for the first time. I had Emend, Ondandestron and Metoclopramide for sickness this time and it was definitely much easier. Keep strong lovely…we will get there.
Nikki xxx
It does sound like your treatment has been particularly poor especially as you are being treated privately. My worse experience was also cycle 2 which I had in the private unit at our hospital because the main unit was very busy and they were taking up the excess.
Its only my private counselling therapy that is private Chaffinch. The rest is the good old NHS ?
Oh Jo, Runawaygirl please don’t run away from chemo. It is tough but you really CAN do it.
Your friends on here care about you and want you to give it your best shot - I must admit that I haven’t read all of your posts, I just popped in to see how everyone is doing!
Go in and nag and complain to your NHS trust/cancer unit and your GP. A few weeks break in your chemo regime is better than stopping completely.
• There are lots of medicines they can give you to counteract the side effects.
• They can reduce the chemo dose (my onc took me down to 80% after round 1) especially if you are losing weight as they work out the dosage on your body mass/area.
• They can change the chemo cocktail. Some people don’t get on with docetaxel but they can switch you to paclitaxol which is more easily tolerated (although more expensive).
• you can take a break, I should have had my FEC 3 weekly but due to infections I think they were 4 or 5 weeks apart, and I missed one taxol completely because I was not up to it emotionally (onc said he’d like me to do 12 cycles but if I had to stop at 9 he’d be happy, I managed 11)
About me and my story:
I’m from the November 2014 thread and was where you ladies are 3 years ago. I was diagnosed at 47, had an 8cm and a 2cm tumour plus 26/27 affected lymph nodes, ER+ 8/8, HER-, stage 3 IDC. My kids were 9 and 12 at the time.
I had a mastectomy followed by 3 x FEC and 11 x weekly paclitaxol (taxol) and 3 weeks of radiotherapy.
I will not pretend that it was a breeze, it was tough, I felt nauseous, exhausted, depressed, cried a lot, shouted at my husband and kids, drank too much alcohol, had that woolly taste in my mouth, all food tasted the same, I went from 9.5 stone to 8 stone.
BUT with the support of the ladies on here I DID IT! I’m still here, making happy memories with my children. As a result of having cancer I have a new job 2 miles from home, working school hours 4 days a week, school holidays off, and we have 2 gorgeous dogs in our family - which we couldn’t have before because of my work.
It’s a really tough time but when you look back you can see it was only 6 months out of your 39 years. Think back to before your diagnosis and then look at something that happened 6 months earlier, 12 months earlier - it seems like yesterday.
I’m glad you are having talking therapy, but sometimes you need to talk outside of your allotted appointment time. Please call the helpline, or Macmillan, or the Samaritans.
It’s great that your husband is going to the meeting with you on 17th. If you have just had cycle 2, I guess you will be due cycle 3 the following week so hopefully they will listen and give you much better treatment and support.
I really do understand and hope that if you’ve got this far in my version on War & Peace that it’s been a little help.
Feel free to PM me.
Sending huge cyber hugs xx
Hi Jo, I endorse everything Riversidedawn has said.
i remember being so very scared when I first had chemo, and I’m sorry your nurses aren’t being very on the ball.
this will be worth it, believe me. You will feel so much better when you’ve completed your course and glad you’ve had the extra preventative treatment. Do keep coming back to let us know how things are going.
love and hugs,
Moijanxx
Hi Jo,
I did not have chemo, so can’t comment on that, but I am sorry to hear about your experience.
When & if you feel you want to, do feed back about your experience in treatment. NHS Trusts do now have clear processes on this & welcome feedback. How to do this would be on the web site, will be given on request or on hospital correspondence. The Patient Advice & Liaison Service (PALS) will also offer support.
ann x
Hello runaway girl
My heart goes out to you and how you are feeling. .you have had some lovely advice and replies. .the only thing I can add is that if the chemo has burnt your arm …ask for a picc line to be fitted. It’s a line connected direct to your veins …no more hunt the veins for blood tests etc and will make life a bit easier.
Even if my blood count is low I should still be able to go for a walk to get out of the house . Hubby wants to lock me up incase of infections but going MAD in the house
Hi Karebear I find going for quiet walks away from people hugely therapeutic and highly recommend it. I also get completely stir crazy after a couple of days when my bloods are at their lowest. I think gentle exercise can also help with bloods and other parts of your body recovering and I certainly think that’s true in my case. I believe that the main recommendation is staying away from crowded, particularly enclosed public places where bugs can find you or you touch contaminated handles and things versus the open air?
I heard that taking manuka honey helps with the immune systems so going to get this one
MARKS & SPENCER OWN LABEL
Marks & Spencer, £14.75 (340g)
WHAT THE TEST FOUND: M&S has come up trumps. A score of 347.9mg/kg of MGO was the highest in our investigation.
Leptosperin levels were the second highest, at 446mg/kg, showing it had been gathered by bees feasting exclusively on manuka nectar.
WOULD IT QUALIFY FOR A UMF KITEMARK? Yes.a
Hi Karebear quite a few ladies on the Oct thread are using that one and seem very happy with it. I have a massive pot that I had bought before chemo so have been making my way through that. Lots of vitamin C can also help - if you are ready to eat fruit and veg yet.
Hi Everyone,
I have just started a cold and my 2nd FEC - T is due on Weds. I go for blood test and assessment tomorrow. If I tell them about my cold, will they delay the next chemo or go ahead anyway? I don’t know whether to tell them or not…in a quandary…
I had a really bad head cold when I went for my first treatment and they went ahead with it. As long as your temperature is fine it should be ok
Morning ladies and thank you for the replies and words of encouragement and the private messages.
I am not usually one for ranting on public forums so apologies for me going on in my posts the other days.
I think the chemotherapy and associated medications i.e. steriods are having a bigger emotional and mental impact than I ever thought they would which I guess was a little foolish of me.
I have a Whats App group I set up with frirnds, family and neighbours in it so that everyone I wanted to know about my cancer joutney could be kept informed of the relevant points rather than individual messages being sent out. On the whole I always kept my posts upbeat and positive but on Thursday I did reach out and admitted I was struggling and people were open armed and I now have some meet ups arranged with friends over the coming week.
I have really struggled this cycle 2 and with a stinking cold on top of it (temps all OK!) its just physically and mentally added to the chemo SE’s. I do believe that my treatment at the Onc Unit on the cycle 2 infusion day has really added to how Im feeling and just the mere recollection of it raises fear and anxiety so will deffo be talking to the Chemo Assessment Unit.
I know there are ladies out there on this cancer journeys (outside of these forums also) with poorer prognosis but their positivity is outstanding and for that I have huge respect and I guess I really shouldn’t complain about having 6 cycles of chemo.
I guess we all just handle things differently and I am a stubborn sod whose mind is still stuck at that initial shock of being told “you’ve got breast cancer” when the initial GP and Registrar said it felt like my lump was either a cyst or fatty lump. My mind is still trying to comprehend that I did have a cyst but also a small tumour sat underneath it. The whole diagnosis to lumpectomy was less that 2 weeks and then chemo within 6 weeks. Not a great deal of time for my mind to even start processing the whirlwind journey so far!
Hopefully my meeting with the Chemo Assessment Nurse on the 17th will prove beneficial and I can raise my concerns and hopefully get assistance on managing the SE’s better!
Thanks, love and hugs to all - you ladies are amazing!
Jo x