Raitchr, thanks for link. Recipes looks great. I've signed up for newsletter. Off to hospital now for blood checks before venous line insertion tomorrow, then first chemo Thursday. 🤕 Just put all my appointments in diary. August isn't that far off!!! 💋 to all.
Hi Mai7, good to hear you are feeling up to working on day 6, I assume you are now over the worst SE?
I have read somewhere that chemo can make you crave salty foods like crisps. Do you have any metallic taste?
A week to go until I start chemo, trying to get a few jobs done at home but also rest too. My friends are taking me out for a meal tonight, to celebrate my surgery recovery and to prepare me for chemo. Also had a lovely weekend with my boys, went out and had fun as I don't think I will be up to days out during chemo.
Roll on end of August when the poisoning will cease!!
Katie11 and BusybeeS - wishing you the best of luck for tomorrow.
Raitchr, thanks for the nutritious link which I've bookmarked.
FEC day 6 for me today and I'm feeling good again and planning to work from home. For some bizarre reason I'm craving marmite on toast as soon as I wake up every morning so i'm just going with it!
I have just read an article in The Daily Mail by a dietician called Jane Clarke. Her website is worth a read for nutrition advice and recipe suggestions. www.nourishbyjaneclarke.com
Julie, Thanks for dropping us a note. It's good to hear from you with recent tips. I think it's hard to not obsess a little over germs but I'm now thinking (following your advice) the hand sanitiser should be for carers only, not for us to use! The fatigue is kicking in a little for me now so I'm being kind to myself and resting as needed.
Thanks, Julie. Really needed that reassurance. Very wobbly today so off for a long walk by the river. ( NOT in it!) Tip on hand sanitiser very worthwhile as I have ( had) one in every hand bag!
Onwards and upwards!! 🤕
Hi Julie, thank you so much for taking time to comment. It is reassuring to hear from someone who has gone through it recently.
I think we are all nervous but will be fine once we start or get through the first cycle.
Hi, was just having a look through the threads on here, and wanted to offer my thoughts, having been through chemo FEC-T, I finished treatment in Jan.
I didn't cold cap, as was advised that as FEC is very unforgiving on the hair follicle and the chances are you will loose up to 90%, I was really glad I didn't as 3 months on, I feel comfortable enough with the inch of hair I now have. IT really grows back very quickly, and I loved not having to worry about having to worry about my hair. This coming from me that had long thick hair, who spent hours straightening and colouring It.
Also don't use hand sanitiser as your skin will become dry from chemo and the alcohol in the liquids makes it even worse, so a gentle soap, and handbag wipes will be enough. Dont get over worried about germs, which is exactly what I did, just regularly wash them as normal.
Drink as much water as you can, that will help with the fatigue, and get a good alcohol free month wash for the T part of the treatment in particular.
For all you ladies starting treatment, it is not as bad as you think, you will have days where you just feel wiped out, but no more than you would if you had flu. Rest, accept help, and get out on the fresh air when you can, and keep drinking as much water with ice as you can.
Thanks girls . He's in hospital at moment with localised infection which is now being drained. We've made the decision to not see each other until he's home, fingers crossed, but just to face time. I couldn't bear it if the chemo was put off . It's now 8 weeks since my op. He couldn't bear it if I caught anything.
Hit TK Maxx today and bought a couple of sweet summer hats, plus a drinks bottle with a central section to put ice cubes or slices of fruit. Also has measurements. Freezer full of frozen strawberries, raspberries and blueberries as its much cheaper than buying fresh for my smoothies. Getting quite anxious now. Pleased I've got the forum and you girls. X
Raitchr, that sounds like a very good idea; measuring your water intake. I found ginger biscuits to be a really soothing snack in the first two days. Take care on any carbonated drinks though as they are less pure than juices and cordials.
I just spent the morning at the hospital getting a check up as my bladder was a bit tender again this morning. No sign of infection and my blood counts were all fine. They said to just keep doing what I'm doing and perhaps have some cranberry juice also. I've felt a little more tired today now the steroids have worn off but not ill, just a bit tired. Will probably have a walk out again this evening to generate some energy!
Anniej, sorry to hear about your brother, a very tough time for you both right now.
Sorry to hear about your brother, must be an upsetting time for you Anniej.
I am taking manuka honey before chemo starts, suppose to be good if you have a sore mouth with chemo but I like it now so have a teaspoon in morning. Also anything with ginger for nausea like ginger biscuits, ginger ale.
I have put aside 2 x 1 litre bottles which I will fill with my daily water requirements so I k now exactly how much I have drunk each day.
Also I am going to try some protein shakes like Weetabix on the go 21g protein, was look1ing at them in Asda and thought it might be good to have something nutritious with calories that I could just drink if mouth is sore.
Mai, good to know re recipe booklet. I'll look into that. My brother passed on his Macmillan recipe book which he got free. They are based on poor taste, poor appetite, mouth ulcers, etc. X
Thanks, Katie. Brother in hospital going down fast, but holding on until I start chemo to help me. Bless that dear old boy. X
I got some pear drop sweets in case of metallic taste. Also some little snacks raisins, nuts and apricots. I've put them in little air tight boxes so they can just stay in my hospital chemo bag. My hospital provide a sandwich and fruit during the treatment, but I don't know how I'll feel, so the bits and bobs are just in case, as are the choccy buttons! 😄
Hi Katie11, don't worry too much about going through chemo, we are doing it together. Some have already started so we can learn from them and be prepared! I was worried about loosing my hair and have gone full circles with thinking about a cold cap. Still not 100% which way I will go until the day. Its the waiting to start which is making me nervous, just wish the NHS had more money and facilities so we could get started sooner!
Anniej, your wig is the same technology as mine. It's fab and gives a natural scalp and hairline. I got mine from hot-hair.
I forgot to mention on this thread, I purchased the Royal Marsden Cancer Cookbook and it's brilliant. It gives lots of tips for coping with taste changes, low appetite, sore mouth etc and the recipes are great. I just made a soup from the book and it was delicious!
Katie, don't worry, you'll be fine and in good hands at the hospital.
Katie, have you got a nice wig? I was freaked out by the thought of looking like a wild nylon haired bag lady and it couldn't be different. I love my wig so much I may just get one for bad hair days! 😍 On the advice of the owner I chose a hand woven one on a lace cap. It looks as though I have a parting, and the browny lace cap blends in with my skin. Tried it with friends and they kindly said it looked as though I'd just come from hairdressers! Re sick buckets, my brother is in palliative care so he's shared his little cancer sick bags with me. Like airplane sick bags but sort of stick around mouth so no spray. ( hopefully)
Hi Raitchr, it's so good we can share life's basic essentials here as we are all facing the same problems! I've been taking my steroids at 6am and 4pm but on next cycle will reign in the evening one a bit earlier so feel less wired! I think the primary reason for waking up in the night was because my bladder was full from drinking so much water.
I found this paper regarding cold capping which you may find interesting:
I must admit, I have still been washing my hair every day, very gently with mild hair soap.
Anniej, good news that you are getting better and can start chemo. You will be a few days ahead of me.
Mai7, glad you are getting on ok, will def drink lots of water as would hate bladder problems. Did you not sleep because you were uncomfortable or just wide awake ? If its steriods then I have read somewhere to take them 8am and 12 pm, never after 2pm as you won't sleep.
Williams500, I have decided not to cold cap and prob won't wear a wig. I have tried one on and it is just weird although obviously I still have hair but I felt like a drag queen, that's just me and in no way about anyone else with a wig, it is just not me!
Cold capping - my chemo nurse showed me a cold cap and it was heavy. I struggle with brain freeze from A/C and icecream so much that I end up with a migraine. The chemo nurse said it may add 15 mins only onto treatment as it needs to be on 15 mins before chemo so when they are putting cannula in and then 20-30 mins after when they are taking cannula out, getting next appointment booked ect so not major time.
I did see a lady on a forum and she cold capped and her hair was great on her last chemo. Yes you could see her roots and she said her hair was greasy for a few weeks until it got used to not washing. I just think that I have to wash mine everyday othewise I feel dirty and itchy. When I wake up in the morning I have "bed hair" and it is so messy I wouldn't want to not do anything with it! I have brought some sleep caps, a few nice scarves, and a few chemo caps, some are plain, some have a bit of bling on them. I think I can manage no hair and after FEC 3 seesion will start to grow back as T x 3 doesn't make it fall out.
Re sick bucket in car, I always have bags and wipes in the boot as the kids sometimes puke but not often these days.
Hi Feelthefear, I am not sure how to get private messages enabled, I am hopeless at I.T. Will carry on looking how to do it!
Hi Williams500, don't worry about my OCD list of having everything covered which I may not need, but these things are useful to share and consider. My energy levels have been great so far, I'm running up the stairs and we've been out walking in the evening locally (about a mile and a half). This morning was my last dose of steroids so we'll see if that makes any difference on the energy front! I agree, keeping up non-strenuous activities is encouraged and helps with overall health and recovery.
Hi Williams500, I think if I had more hair maintenance, I wouldn't bother cold capping due to roots growing out as well as potential thinning. I've had mine blond in the past so I know where you're coming from with root maintenance, but I've gone natural for now until I go grey! I have also purchased a wig expecting some thinning, at least, and the wig looks fantastic! I'm a bit wary of claims about the chemo not getting to all of the cells because the chemo is pumped into the bloodstream and circulates over a number of days before degenerating the cellular structures. It may be worth checking for medical research-based evidence. I suspect the cold capping adds to patient in-time and reduces the number of patients accommodated in a day, which is potentially a bigger concern for hospitals.
Hope all goes well for you. When is your chemo start date?
I have the same worries as you Raitchr about the cold cap. At first i thought what the hell, i may as well try but as ive read more about it I am thinking not.
I have quite long dyed blonde hair and I am always blowdrying or straightening it and think i would be more self concious walking out the house with huge dark roots and hair that I can't style or wash.
Plus the extra chemo time doesn't appeal and the nurse mentioned to me about the chemo cells not reaching your scalp as well.
Think it might be different if it was a guarantee but I could still lose it all!
Went to the wig clinic at the hospital on Thurs and was really surprised how realistic they are so going back next week to try some styles like mine and think that's the way I'm going to go, really keen to get my wig in place as soon as possible.
Glad to hear you are doing well Mai7 and thanks for the advice! xx
Hi Anniej, that's great news, I'm so pleased for you.
Have a great weekend and best of luck for next week. X
Hi, it's now FEC day 3 and I am feeling surprisingly good. I had some bladder discomfort yesterday evening so drank lots of water and had water in the night from 3am (yes that's how much sleep I got!). Bladder is feeling better this morning so I can't emphasise enough the importance of sipping water all day - aim for 2 litres. Still, no nausea or sickness, just a bit of heartburn.
Thanks for thinking of me, Mai. Anti biotics seem to have kicked in, and my two little weepy sores are now drying up nicely, so hopefully I'll be able to get on with chemo on Thursday . Who would have thought I'd ever say that?! How life changes.
Have a great weekend ladies. X
Anniej, how are you getting on? Are you able to start chemo soon. Sending positive vibes your way as I know you've been finding it tough.
Katie, I have to admit, I was tempted to have it removed but after 10mins it's not noticeable any more. It's just that first 10 minutes.... When it comes off I felt like I had water running down my head from the nerve endings reactiving! Depending on the results from this cold cap treatment, I may or may not have it next time.
Yes, the green tea seems to be recommended as a preventative but not to have much during chemo as the interactions are somewhat Unknown.. My employers are being really good at supporting me with whatever I want to do so I can work from home or go in if I feel well enough and not at immune system risk etc. I will definitely go off sick and not try to be wonder woman if I feel ill!
Have a fab weekend everyone!
I will have to get peppermint tea,usually drink green but keep reading on internet to avoid it.
Both my pregnancies were morning sickness free, had 2 boys, so hoping to skip the sickness with chemo, famous last words!
I am lucky that my work is being great! Its local government and have been there 8 years. I get 6 months full pay and 6 months half pay. They did ask if I wanted to work through treatment but previous employees didn't go in from diagnosis to 6 weeks after radiotherapy. I said I would work up to day before surgery but not go in to work during chemo to avoid germs. They were happy with that. I have been into office last week to drop in a new sick note, nice to see them but also nice not to have to work for a bit.
Best wishes everyone, enjoy the long weekend!
Thanks Heather, I managed to get a good 5 hours sleep propped up on 3 pillows to combat light head feeling and risk of heartburn (a bit like pregnancy all over again!). Took sickness pills about 11pm last night and again at 6am this morning. Felt slightly achy and sluggish but surprisingly good. I Feel like a chemo fraud! I must admit my granola is tasting a bit bland this morning so added some cinnamon and extra fresh fruit! I'm drinking peppermint tea to keep my tummy calm too. Also keeping up the water drinking - aiming to sip 2 litres every day throughout treatment.
Thanks for the dental info, I'm currently using the Biotene toothpaste, mouthwash and gel which is designed for dry mouth and saliva replacement. I also have some eye gel which is designed for dry eyes which I got from the opticians.
Ive booked today off work as despite feeling good, I'm feeling a bit sluggish and confused for concentrating!
Mai7 glad it went ok, rest and look after yourself.
Re dentist I have been for checkup and hygienist, you can have check up during chemo but no hygienist in case your gums bleed and you get infection.
Hi Raitchr and Anniej, all good thanks. I posted a lengthy post on here about my day but it's vanished so I don't know if I deleted it by accident when I edited it or if there was an update bug! I had the cold cap - 10 mins of discomfort and then fine after that. Treatment part is easy and the nurse chats with you, which is calming. I don't feel tired at the moment, I'm just buzzing with energy, but will try to sleep now. Just a slight light-headed feeling and minor confusion.
Very comprehensive from all the ladies!😄
To add to the list, I've just had my dental appointment and was told to get a non foaming toothpaste. Apparently the foamy ones feel peculiar when having chemo. Who knew??
Was hand gel mentioned, and anti bacterial wipes for all surfaces in strange places?
Good luck to everyone starting. Mai, I think you're the first . How are you?
Thank you for the replies ladies. I'm trying to eat healthy, so hopefully will have some nice food in the house, I'll also try freezing pineapple - sounds like a good idea! I'll definetly get a thermometer as well. I'm trying not to over prepare - I'd end up buying so much stuff that I don't really need but I do like to be prepared. Think it's trying to keep a little bit of control. 😀
Re food I was told to just eat what I wanted, try and stay healthy with fruit and veg. If needed they will refer you to a dietician if you want help and advice, was told to ask Oncologist to be referred before 2nd chemo, you don't have to have appmt, they will phone you up and speak to you which I thought was a good idea.
Don't forget a thermometer, although you may have one already. I splashed out and brought a Braun digital in ear one from Amazon. It shows green if temp is ok then orange if slightly raised and then red if high temp. We have an older digital one but it goes under your tongue but as we have children and germs I didn't want to share! It will get used by the family after I finish chemo so can justify the expense.
I was told to take temp 3 or 4 times a day and keep a diary so over each cycle you can see which were good or bad days. I thought I would note down any side effects or queries so I had a record of what to ask Oncologist at next appmt.
I also have started having a spoonful of manuka honey grade 20+ each morning, it is supposed to stop mouth sores from chemo. Have been told that if you freeze fresh or tinned pineapple pieces they are really nice to suck when your mouth tastes like coins! Also plastic cutlery can help if you have metallic taste in mouth.
Drink 2 litres of water the day before, the day of and the day after chemo to help with side effects.
Hi busy bee, good luck for 3rd May. I'm not sure what you already have and whether you have hats etc so I'll just do a rough shopping list of essentials which I bought and you may or may not agree based on personal choice and taste (I've read a lot of research to compare consensus of opinion and cross checked on cancer research org to try to validate). I don't eat meat or dairy. I probably tend to over prepare so don't be alarmed by this list!
Healthy food with low risk of upsetting stomach and without phystoeostrogens:
Breakfast: sugar free or low sugar granola, chia seeds, walnuts, Brazil nuts, fruit juice (I add oyster mushroom powder at breakfast which I get online from indigo herbs, glastonbury).
Meals: kale, broccoli, spinach, bok choi, avocado, cucumber, celery, spring onion, leeks, chives, sweet potato, carrot, tomatoes, radish, lettuce, beetroot, oyster mushrooms, shiitake mushrooms, portobello mushrooms, all mushrooms in general, wild salmon, chai seeds, quorn, whole grain rice, buckwheat
Herbs/spices: black pepper, ginger, cinnamon, turmeric, Ceyenne pepper, parsley, Rosemary, oregano, thyme, mint, basil
snacks: almonds, hazelnuts, berries, papaya, figs, satsumas, red grapes, lemons, pineapple, dark sugar-free chocolate, minty chewing gum, cakes made with whole grain and natural/safe/low sugars
drinks: almond or coconut milk (I'm avoiding soya or dairy due to oestrogen risk), green tea, ginger tea, camomile tea, peppermint tea, (no carbonated drinks), fruit juices (not grapefruit as it may interact with chemo drugs)
hygiene: alcohol free mouthwash, soft children's toothbrush, hygiene hand gel, extra 2 buckets in case of sickness and a small bucket to keep in the car in case of sickness
aesthetics: wig (from "hot-hair") hats, soft bamboo skullcap, black nail varnish (to protect nails from sunlight), eyebrow pencil
I think that just about covers it!
Take care. Xx
Today was FEC day 1. I feel fine right now and have just been for a one mile walk after tea. I've been feeling slightly woozy/light headed and feel like I have a lot of energy which is probably a mix of shock and steroids! So here is today's journey in detail:
Yesterday I drank 2litres of water over the course of the day (as well as my usual green or herbal teas). My last meal yesterday was a mushroom and goats cheese veggie burger with sweet potato fries.
so, here's how my day went today (and my partner was beside me the whole time):
Breakfast: water, guava juice with oyster mushroom powder added, low sugar granola with chia seeds, walnuts and Brazil nuts. Camomile tea.
Arrival at chemo bay, Given anti sickness pills. My hair was dampened and conditioner smoothed over it and cold cap applied. The cold water pumps in and slowly freezes over the next 10 mins, this is weird, made my body feel overheated which was the opposite of what I expected (probably the adrenaline rush and the central core trying to compensate for heat loss) it made me feel agitated and like I wanted to run around the room. This passes after 10 mins and then I didn't really notice it. Half hour or so waiting for cold cap to take effect until treatment can start. Had sips of water but didn't want too much to avoid toilet trips!
Canula set set up and then drugs administered over the next hour. I found this bit easy and only noticed a slight metallic taste for a short period and a slightly warm feeling in my chest.
Lunch: wholemeal egg and cress sandwich, tropical fruit juice, satsuma
After treatmentment completed I was left with the cold cap on for another hour and just listened to music. chewed some minty gum which was good for mindfulness and feeling fresh in the mouth and head. The cannula was then removed and I was given my home-pack of anti-sickness pills. My urine was red straight after chemo (nurse confirmed this is normal) but has faded after drinking plenty of water.
Called in the large supermarket on the way home to get more fresh healthy food. Felt fine, just slightly spacey and befuddled.
Tea/Supper: stir fry with salmon (stem broccoli, green beans, red onion, chilli, ginger, oyster & shiitake mushrooms, chow mein sauce), chai seed and coconut Mango "yoghurt" dessert
Went for a one mile walk to burn off some energy. Felt fine - still just a bit spacey. My partner called in the local store for some gingernut and some arrowroot biscuits in case I feel sick tomorow and can't eat, whilst I waited outside (smaller stores may be more risky for germs as you can't avoid people!)
Now relaxing and chewing minty gum again, just about to watch a film. I don't feel sick at all.
whew, hope you find this useful or at least entertaining! Xx
Hi I have gone full circles on cold cap. I don't think I could stand the cold and having greasy hair as will only be able to wash it twice a week. Also worried I will loose it on my crown. My hair is fine but there is lots of it, and cut into a bob. It is dead straight so if I loose any it may come back curly it will be very noticeable!
Also I worry that if scalp freezes will it stop any chemo getting to any cancer cells in my head?
Raitchr, I'm hopeless giving blood, and my oncologist just thought it would be better to have a line in. I have had to wait for a surgical opening so I'm a bit behind schedule. It will be nearly eight weeks from my op. My arm is black and blue where the nurses have tried to get blood out, or put cannulas in for all the different tests. I'm really fed up with it all. To cap it all my nipple is inflamed and I am now on heavy duty anti biotics. Hope it doesn't hold me up. 🤕Not cold capping as I don't want to spend the time, and I'm a complete wuss with cold. My idea of hell!