@poppy261 no I didn’t get that advice and I eat kefir yoghurt and drink kombucha regularly (both fermented) and I just carried on and was fine. I didn’t get a single infection, cold or cough during my 3 months of chemo. But I do think different hospitals give different advice! And Dr Google always has a million different opinions so best ignored 
Yes that is very true @sam1204 
.
I keep off the general Google sites for that reason, but Ive accessed other NHS advice sites, reputable health research sites, MacMillan etc, asked Oncology staff etc. All reputable.
But yes, I think even different NHS sites/staff vary hugely.
Ive asked my Oncology Team about cocoa and they refused to even believe there were any neutrophil benefits, simply saying chocolate was always nice to have 
. So what do we do . Its worth a try regardless. 
I then recently asked them about the compression socks and ice gloves/socks ready for Pac. I was told by my Oncologist and Nursing staff they had never had anyone use them in the Unit, and had never been aware of any benefits to them. One older Nurse didnt even know about them. Yet they encourage Cold Capping. 
. Confusion is everywhere. Im left in an unknown as my Team are not supporting them.
When we react badly to chemo we want to hunt out triggers, but also hunt out things that help. There are lots of hurdles at every turn.
I am aware we are all so very different, and what suits one doesnt suit another. Some sail through chemo and others hit a living nightmare. Which is tough going and scary. Even when people are on similar diets and lifestyles they can react like total opposites.
I guess we have to find the level of risk we are prepared to take, whilst going through some awful scary times. Thats hard when we are shattered and have chemo brain. We want staff to be knowledgeable and informed. We want quick, logical answers.
But my Team like everyone can have biases, personal views, different training. Though my hospital are a Training Hospital so should be up to date with everything. .
Thanks so much for all your help and thoughts 
Im so sorry to hear you had a set back with your hospital refusing to do a BD Scan. I can really understand how frustrated you must be feeling right now. Its not right that you had to go private to get answers, they are not cheap are they!! . But at least you have results to show your Team they got it wrong. Goodness how confusing is all this. I never thought chemo affected BD either. But at least hopefully you can get something done about it now.
Sending you many thanks for sharing. Onwards and upwards hey 
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note Maramaldes: if a marmalade is labelled as Seville or Bitter marmalade Ìt is made using only Seville bitter oranges. IF you have been advised by your oncologist to avoid Seville oranges these are best avoided. look for the sweeter fine shred main labels instead but be aware these have a high sugar content.
AS an alternative you can peel and simmer down a fresh sweet orange with a little ginger, maybe a spoon of sugar if your tastebuds prefer sweet and keep chilled in the fridge to act as a simple spread. add some apple if you find it needs a little pectin or even thicken with a little vegan jelly agar agar ( can be found in larger Holland and Barrett) that way your getting the benefit of some bit c and other good orange stuff and can be sure there are NO Seville oranges in there.
St Dalfours orange and orange and ginger conserves are made with sweeter oranges, a teeny hint of the juice from a Seville to add to the orange taste rather than a whole Seville orange plus a little grape juice and date juice. GOod choice if sugar tastes awful and you can safely keep chilled in a fridge. TIP use a clear marker pen and sticky label to clearly write the opened on date so you know when to bin it.
What a good idea @wibbles . .
I checked out some of the StDalfours spreads you recommended, and they actually stated 3months shelf life once opened , for their marmalade. Which sounded a decent amount of time. Or was I looking at the wrong orange item? Im suffering chemo brain at the moment 
.
Its good to know we can have sweet oranges. Im making a list for Pac chemo in two weeks. Ill make sure I have some oranges, lemons and 100% cocoa in cupboards. 
. Thanks @sam1204 .
My silk socks and gloves came in the post yesterday. So creams at the ready for hands and feet, as well.
Ive used high concentration Vit C mouthwash last couple of days, and my mouth feels much better. I.e 1 full effervescent VitC tablet, placed in a tiny bit of water (1/4 small cup. I previously used 1/2 a tablet in half a cup ). Could be just a coincidence, but the higher concentration does seem to work so far. Will wait and see. May be a red herring. I swish my mouth out with it three times a day after brushing my teeth. Ive not used other mouthwashes at the same time, as I wanted to see if it was effective on its own. Time will tell. Positive results so far
Sometimes we just have to go with our gut feeling dont we.
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TBH any product that lacks preservatives, loads of sugar and or salt is not something I would want to risk keeping inside a fridge for three months on chemo. The risks of natural yeasts and bacteria moving in and contaminating the product are high, add summers heat and it becomes even higher and no one wants an explosive glass bottle of fizz developing in their fridge during the summer on Chemo. I worked in food share and community kitchens as a cook pre switching fully to art commissions and my younger DD is a trained chef with an interest in food allergies and food on chemo as she is still under an osteo oncologist (benign bone tumour’s) and her fiancé ( Merton a cancer ward) has lived with cancer since childhood. I checked with her and she says four weeks is the top end of what she would risk especially on Chemo. remember the general storage recommendation is for the general healthy adult population who are NOT on Chemo. Other makes of marmalade type spreads contain a lot of sugar which acts as a food preservative.
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Very good point @wibbles . Never thought of that. I was thinking their natural sugars would be enough.
We have to keep thinking chemo and lowered immune system…
dont we
Completely different ball game. 
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I’m starting to wish I’ d never mentioned marmalade! I don’ t even like it THAT much! But yes, it’s the Bitter Seville Orange that’s the no-no with many - not all - chemo drugs. Best avoided.
Sorry to hear some of you are really struggling, both with the excessive heat in parts of the UK and with your treatment. God but it’s tough isn’t it?
Day 4 post-Cycle 3 of EC yesterday and I hit rock bottom! Definitely worse than previous cycles, although my drippy nose has stopped running, which is something to be grateful for. But I’ ve been senseless with fatigue, so much so that I dragged myself to bed at 19.00 last night and stayed there for 12 hours. Can’t say I feel ‘rested’ even after that! It is what it is.
Yogurt…..an interesting topic. I think on balance the very best one is probably the plain unflavoured Greek or ‘ Greek Style’, higher in protein, no added sugars, and you can cook with it as well as use it for smoothies or as I do, just dolloped liberally onto a bowl of bananas, blueberries, strawberries, grapes, nectarines - whatever fruit comes to hand.
I think many of us are left in the dark when it comes to diet and the ‘ safe’ foods we can eat. I’ ve certainly never been given ANY advice whatsoever by anyone dealing with my treatment. Heck! I’ ve only ever met my oncologist once, and that was 3 months ago before I began chemo. Some of you seem to be in regular contact with your teams, which must be reassuring. Just shows how different standards and practices operate, possibly depending on your postcode!
Right, girls, I‘m away to forage for a marmalade-free breakfast, try to boost the energy levels!
Cocoa, anyone?
Sending love xxx
Gosh where do you all find the energy to type and think of all these things
I am day 10 post 3rd EC cycle. Anyone still feel weak? My arms and legs feel a little weak. Didn’t have with cycle 1 and 2.
I’m getting very nervous about Paclitaxel now. Seems a lot get side effects
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Goodness it does seem to be a common problem with a number of us in this group, with EC 3rd cycle to have savage fatigue hit us. 
My heart goes out to yourself @maystarter and @bea4 and anyone else struggling loads
I could barely function for over 10 days. The peak was day 5 after 3rd cycle, which was cripplingly awful. Couldnt even talk to friends on the phone. And no, even after sleep I didnt feel refreshed. Which was hard. 
It did ease, later in the second week, so I could get in my car, but I didnt want to walk far. All we can do is rest rest rest. I spoke to my Team and they said if my body needed rest, then rest. Not to push against it. They acknowledged EC was tough. And acknowledged the cumulative effect. So be kind to yourselves. I would happily have given chemo up last two weeks. .
Im on my 4th cycle from Friday. Pumped up on meds. So hard to guage. But definitely very tired. No nausea yet. Which is a bonus. But aware Im needing to rest a lot. See what day 5 gives me. The dreaded 4-7 day crash when chemo hits the hardest.
Sorry to hear @bea4 that its been so long since you saw your Oncologist. . That is a huge amount of time when im seeing mine fortnightly. Id push to see them more if its possible. It shouldn’t be a lottery to that level .
Glad you created a debate around Seville Oranges 
Who would have thought an Orange could interfer with liver function and chemo to that degree. Info is seriously lacking on the food safety side of things.
Rest up ladies. Sending you love and strength. We certainly need it.
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Funny you should say that, @maystarter …. about finding the energy…I’ve just looked at the inspiring ‘Cancer made me eat’ thread and wondered the same thing! How on earth do people find the energy to prepare or put together ANYTHING? On the bad days - of which there are many - it’ s all I can manage to do to drag myself to the kitchen, let alone remember what I went there for in the first place….
Yep, Cycle 3 of EC, worra pig! My brain feels like it’s smothered in cotton wool and my limbs are weak and wobbly too. I think we’re lucky, to be honest, in knowing that this is our new ‘ normal’. It does help, having the info about chemo fatigue, which seems to be the most widely reported and bothersome side effect. At leat we know we’ re not all going round the twist.
Am fascinated that so many of you have regular contact with your oncologists! As I said earlier, I saw mine once, in April, for about 15 minutes. That was it. No suggestion that I could contact him, although I suppose I could if need be. But let’ s just say it wasn’ t exactly encouraged. The only contact I have is with my lovely BCN key worker, otherwise I just have one brief phonecall pre each cycle with an ANP who tells me my blood tests are ‘okay’ and my planned chemo will go ahead. That’s it. Of course, I’ m post-surgery so my chemo is ‘ preventative’ which probably puts a different slant on things, I’ m not sure. Maybe I just don’t ask enough questions!
Upward and onward, girls.
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I’m the same. Only seen oncologist once and that was 3 weeks pre chemo starting. I am due a review in 3 weeks though.
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Im wondering if they just use staff differently in different areas then. As Ive rarely seen my BCNurse directly for weeks now. Not even for the seroma ive had. They just handed me over to Oncology. Ive never even had the BC Support Worker ring me. So perhaps your Nurse @bea4 is doing your Oncology support .
Hoping you have seen your BCNurse more as well @maystarter . Or at least someone.
Re Pac. The feedback has been that many do have less fatigue with it compared to EC. But we do have to be aware of : peripheral neuropathy (toes and fingers), skin dryness, mouth ulcers, rashes, hair loss, some fatigue. The main one being very vigilant during transfusion. If you notice any “odd”symptoms during transfusion, tell Nurses straight away. Often cycle 2 can create problems during transfusions, but they seem well supported by staff. They will stop treatment, reduce speed, reduce amount.
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Yes this is me too! I could barely move my legs yesterday, thought it was a combination of chemo, 30 degree heat and lack of sleep, plus I asked for a look at my blood test results on last chemo day and can see where i am starting to drop on the RBC and HB counts, so Im trying to include more iron rich foods in my diet but Ive been awful this week with sugar and crisps trying to get through the heatwave with a wierd tasting mouth. So maybe those who are tired and feel a little wobbly might be starting to drop in iron levels.
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May be why im craving red meat today? My HB is low but just in normal levels.
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Hiya everyone, sorry to hear some of you have been floored this time round. The heat has certainly made everything much harder. I had a wobble myself. I have to say regarding the Iron issues, my oncologist told me I was a little anaemic. To be honest, that wasn’t a surprise my iron has been low off on on my whole adult life….It got flagged on my pre-op and was told to take over the counter Iron tablets (with a glass of OJ). I have been taking them since then, and my oncologist did tell me it was ok for me to do so…..have no idea how much, if any, I absorb, but it must be helping me a bit???
@bea4 I have only seen my oncologist twice. Once to discuss what chemo having and all the side effects etc and to get consent, and the Friday just gone, just before my halfway dose tomorrow. He is going to see me again towards the end of my treatment to go through the hormone therapy and possibly the targeted therapy. I also felt the Breast care team washed their hands of me after giving me the results from my surgery and passing me off to oncology. There was a note saying that I could contact them if I had any issues regarding my breast. They did organise an appointment to see them in a years time. It would have been nice to have a check up around about now, just to make sure everything is as it should be.
Does anyone do a fast before chemo? I have been doing a calorie controlled one(kind of as I stopped counting 
) before every dose. Fasting today, no breakfast, no lunch, no milk in morning coffee. Black tea and decaf coffee the rest of the day too. I will have about (500-800 calories tonight) for dinner. Tuna with light mayonnaise, spring onions, cucumber and raw broccoli. I will have a small banana. Not to mention a small glass of oj with my iron tablet. LOL I did have to move over to light mayo, as I realised how many calories were in the normal stuff OMG . I will not have breakfast or lunch tomorrow. After chemo( much later session than normal, then I will tuck in!! I feel, that for the most part ( not cycle one , as that was the worst and such a shock to my system and scary as we don’t know what is normal for us). I have gotten off lightly. It also makes me wonder, If the pac is gonna get me harder instead???
On my worst days, I plan for ready made stuff that can be thrown in the oven, for me and the kids….It’s hard enough to focus let alone cook. The saying is this house is, any day you get fed is a good day! I also try and put things in the fridge and cupboards that are easy to forage…..a bowl of fortified cereal with lots of milk is an easy grab too. Raw broccoli ( not the tough stalks) is easily added to salad, stir frys etc for a little good boost. Don’t know if that helps any one.
Trying the vit c see mouthwash trick, just started today, as my tongue feels dry and hot all the time…my Corsodyl mouthwash seems to be working less over time. I will be asking the team about what they can give to help me tomorrow, as their stuff may be better. So thanks for sharing that @poppy261 
.
We do need to be kind to ourselves…try an celebrate the good/better days.
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Hi @baldiesrus .
Re mouthwashes.. in Posts 373-5, I listed all the mouthwashes my Oncologist Team advised me to use. And how to use them as preventative washes as well as during breakouts. 
They advised against Corsodyl adult washes as they contain alcohol in that can aggravate chemo sensitive tissue. The children’s ones are alcohol free.
But I get all of my washes on prescription. You should be able to as well, as your tender mouth is chemo related. . Im going through loads so it would be expensive to pay for them myself. The only one they havent paid for to date, is the Vitamin C tablets. But Ive not asked if they would pay. I needed to get some over a weekend, after talking to 24/7, so I bought 3 tubes myself for ease and speed.
Re fasting pre chemo…. Due to my odd nausea….I was advised to eat light meals prior to chemo.
I avoid greasy/heavy foods. Big breakfast now seriously turns my stomach, like morning sickness responses .
So Ive had home made milk smoothie, mixed with bananas, strawberries, blueberries, or any combination of fruit, and a couple of sweet pancakes with honey. This 4th treatment with EC, I had a bowl of Special K, with banana, milk, and an extra cup of milk. Which was fine.
During treatment, I take snacks, as I get hungry. Chocolate of any kind, banana, sparkling water, rice cakes. If Im there over lunch the hospital provide sandwiches, yogurt pots, cake, herbal teas, tea, coffee. Yet I avoid normal tea/coffee altogether now. They make me more sick…again like morning sickness avoidance.
Counter intuitively, my nausea feeling is mainly created when Im getting hungry.
I.e. ..After EC chemo I have to eat something quickly if I feel nauseous, otherwise I can be physically sick. So eating actually, strangely, stops my nausea. . Odd but true.
But I do feel we have to do what works for us. Depending on the drugs we are given. Plus chemo affects us differently. So if fasting helps, go for it.
We need bags of tricks that may seem yin and yang/opposites/contradictions, but they all add to our aids. All invaluable. So thanks so much for sharing. . I may need your method for Pac.
Cancer Research acknowledge some things can help one day, but can hinder the next. But when they help, we need them. We just need to work out when to avoid them.
Sorry to hear, yet another lovely lady is not seeing her Oncologist that often 
. I know Teams are stretched, but its a scary treatment we are going through and we definitely need a lot of support from NHS Teams.
But I do also access 24/7, BCN Nurses and MacMillan Nurses. Ive also got a BCNow Someone Like Me Volunteer who is wonderful. So do get help from other sources if anyone feels isolated. MacMillan also do Volunteer, phone support workers for 8 sessions. Id recommend all of them. Ive really needed the chats some days.
Its been a huge life changing experience, and the speed of diagnosis and treatments is overwhelming .
The treatments are not easy to go through. The worry of cancer returning is huge. So we need as much help/ideas as we can get dont we.
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Sending you love strength and positive vibes for todays 4th EC @baldiesrus . Hope it treats you kindly.
No more EC after this yeh. 
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The big crop in April. 4weeks before my hair started shedding. . Wig at the ready as I left the Hairdressers. . Worked a treat
Spot the difference. Chemo Madness. Do something each day that makes you feel happy.
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Thanks for the well wishes earlier today.
Feeling a bit spaced out right now lol, and reading text is a challenge lol . My bloating has started today, which is much earlier than normal….4th dose escalation perhaps. Taken Buscopan to try and help….Oncologist said it was ok to use as I needed it. Trying to take as little as possible regarding other meds (if I can). The nurse gave me Manx healthcare Benzydamine Hydrochloride mouthwash to try. No gel though. After you saying that you were told not to use Corsodyl because it has alcohol in it, this stuff also has alcohol in it. Corsodyl now sell an alcohol free one….turns out I bought the regular Doh! I have previously suffered from Oral thrush, and was expecting my tongue to be the problem. I have successfully used it when I couldn’t get the medication for it anywhere. I guess my brain thought better the one you know works lol. Your vit c trick, does offer relief, thank you…and it’s cheap whoop whoop.
How are you today? Has this cycle been different to the others? pleased this is the last does of EC too. I was given different pre meds for Pac…1 tablet 3 hours before treatment…..I get up at 6am and my appointment is 8.30, but the nurse said that would be fine….few. We need all the sleep we can get….after all the trips to the loo throughout the night.
Loving the pics, you rock your wig 
and sense of fun. 
I take snacks, but only seem to eat the mint humbugs….find them much more effective than lemon sherbets. Never been at the hospital at lunch…as I have usually finished before then, or just as the trolley comes round Doh!
Hope all the other ladies are feeling well today, or as well as you can if having a bad day. Tomorrow may be a better day, so hang in there.
Hi @baldiesrus . Fingers crossed this week is kind to us all.
This will be my first day without meds. So watch this space . Tuesday was my worst day last time. Ive got the garbage fatigue and weakness. So Ive just zoned out, slept, rested. .
I make sure I eat well even though my appetite is lacking. Lots of pre made meals in the freezer. Variety of snacks/grab foods like you. Huge help.
I made a liver casserole yesterday to boost my iron intake. Thanks for Iron check ladies . And im drinking like a fish, and eating foods with high water content. 
. To whoop that chemo. 
Hope you manage to rest and give yourself TLC, in between all the loo stops 
. We certainly dont need the gym .
Re mouthwashes and alcohol. . Confusion is everywhere . Id read the ingredients and hadnt even clicked ‘ethanol’ was alcohol 
. I give up. . Its like sugar, sucrose, glucose ??? Hidden words that throw us during chemo madness.
I try to just believe what I get told, but experience says I need to keep checking. Or can I be bothered Contradictions are everywhere even with NHS. I guess NHS can only promote things they can access via prescriptions, and are business led. So can’t prescribe Corsodyl etc. Who knows…if it works, use it, if it doesnt find something else. .
But keep the sharing buzzing. 
Seems Daily Corsodyl is alcohol free. . But VitC is working well at the moment. Bag of tricks to the ready if that changes. 
. Plus I avoid all sugar sweets 
as they feed my ulcers in seconds. Ouch.
Ive had no info re Pac and Pre Meds. . Im assuming they will tell me that at next Oncology meeting next Monday. But thanks for sharing. 6am start is grim . But yes, manageable.
As you say, the more we know the less of a shock it is.
We can do this. Baldies together hey 
.