74.3K members
1.2M posts
cancel
Showing results for 
Search instead for 
Did you mean: 

May 2017 chemo starters

Mai7
Member

Re: May 2017 chemo starters

AnnieA, how are you getting on? Are you all prepared for Wednesday? X

katie11
Member

Re: May 2017 chemo starters

Mai7, sad thing is she doesn't she just sits there looking at me! Lol xx

Don't know the ages of some of you ladies but my chemo nurse has given me a leaflet from the willow foundation. They arrange special days out or weekends away for those with illnesses for those under 40. She said one lady has just had a weekend to centre parks with her family, which sounded lovely as I'm feeling pretty guilty at having to cancel our summer holiday this year for our boys xx
katie11
Member

Re: May 2017 chemo starters

Hi sodastream, so lovely of you to think of us and let us know there is light at the end of the tunnel. It is lovely you are all still in touch and are all fit and healthy - very inspiring xxx
Mai7
Member

Re: May 2017 chemo starters

Katie11, yes scary indeed but at least your dog would have barked to get attention instead of being a quiet sympathiser! 

Mai7
Member

Re: May 2017 chemo starters

Hi Sodastream, thanks for dropping by, it's lovely to hear from you. We really have been a lovely group here and keep each other going, I think you become like a bunch of meer-cats looking out for one another!  It's good to hear that you have stayed in contact with your group and still meet, I hope we can do something like that when we're finished with treatments and surgery as its a very special kind of friendship like no other - like a bunch of friends who meet in a titanic lifeboat!  I've made a note of the pharmacy items you mentioned......and wow, the risk taking and saying yes to everything ...... sign me up, I'm already adventurous so goodness knows what else I might try then Lol - still haven't done a bungee jump or eaten oysters yet! I agree about the attitude change - I feel more alive and positive than ever before. I think you realise how trivial your daily whinges were and who needs an adult colouring book for mindfulness when you have BC to keep you bang in the moment! X

Sodastream
Member

Re: May 2017 chemo starters

Hi Ladies

 

I'm from the May 2014 chemo group.  Today we went up to London for our annual meet up to celebrate 3 years since we all met on this forum.  Just a little ray of hope for you is that all of us are doing really well are healthy and loving our lives since our diagnosis.  We all agreed we have a new attitude to life, say yes a lot more and take risks we would never have done previously.  This forum was our lifeline and we laughed our way through chemo as you are beginning to do.  We started a Facebook group so we could share photo's of our hair.

Good luck to you all and my only advice to you is don't suffer as there is a medication out there to help with most symptoms, emend for sickness (you may need to ask as it is so expensive it's not offered routinely), diafflam for mouth ulcers, senokot and lots of prune juice for constipation.  X

katie11
Member

Re: May 2017 chemo starters

Gosh Mai7, that's scary. Love how the cat tries to help but other half snoozing ! It would be the same in ours. If I have even been sick in the past the dog comes to sit with me and hubby doesn't even know I'm awake! Xx
Mai7
Member

Re: May 2017 chemo starters

Raitchr, just take care when you do go, I had the same problem around day 4/5 and went in the night which caused me to get very fainty and clammy - in fact when I went to dry my hands on the towel, I somehow found myself waking up kneeling on the floor with my head leaning against the towel dryer so I must have blacked out for a few seconds. So good idea to not be alone. My cat was crying and scratching at the bathroom door at the time, as if he knew there was something wrong (partner was fast asleep in bed though Lol!)

Raitchr
Member

Re: May 2017 chemo starters

Morning all, 5am start for me too! Caught up on Masterchef final before anyone told me the result, so bonus for being up early!

 

Drinking black coffee to see if that helps the bowels, may have to go and bounce on the trampoline in the garden to see if that works.

 

No sickness feeling this morning!

 

Have a lovely weekend, stay well.

 

Heather

Mai7
Member

Re: May 2017 chemo starters

Katie11, I see you are awake early! I've been awake since about 5am, ugh. I'm good this morning thanks and blood coughing didn't come back, thankfully, so the lung metastases fear has gone away again. This BC and chemo certainly keeps you on the edge and causes way too much paranoia! The funniest thing last night is that we were watching the film "Black Swan" at the time and the lead character suffers from stress induced psychosis and imagines she is bleeding when she isn't! That was way too creepy.  Hope the rain stops so you can enjoy the bbq.

 

Enjoy the weekend everyone and get lots of fresh air! ☀️ 🍃

katie11
Member

Re: May 2017 chemo starters

Sorry for spellings stupid predictive txt changing things without me realising!

Anniej as for mirco blading it didn't really hurt to be honest it was more of a scratching in a nice weird way. Kinda like if you have ever had them threaded. X
katie11
Member

Re: May 2017 chemo starters

Hope Mai7 and Heather are feeling better. Mu still have been worrying to see blood coming up.

How are other ladies getting on?

Anniejust did you book a masterclass or workshop or are they both the same? I'm definitely going to book on one its worth it for the goodyear bag. Please do tell us what it's like.

Hope you all enjoy ur weekend. We were going to have a BBq but have now woke up to rain! Typical xx
Mai7
Member

Re: May 2017 chemo starters

Anniej, I'm doing really well thanks. Had a small scare this evening - I blew my nose and it bled a little then not long after I coughed up a few bits of blood but then it stopped so it must have been the blood from my nose which ran down my throat! 

 

Raitchr, I've been taking a senokot every evening as ALL sensitive tissue areas need to be kept in good condition! Yes, maybe too much info but I think it's allowed here.  This is the place for tmi! 

Raitchr
Member

Re: May 2017 chemo starters

I am doing well thank you. Very tired today but finished steroids too. Constipated if you really what to know but hoping senokot will do the trick tonight, too much info??  I don't usually take much medication except vitamins and hay fever so struggling a bit!

 

Hope everyone else is ok.

 

Heather

 

 

Anniej
Community Champion

Re: May 2017 chemo starters

It is, Katie. Apparently the goody bag is worth about £200!  Can't wait. People are very generous, aren't they? There's mac makeup in it. I'll tell you all about it on Monday. I was going to have my eyebrows done, but when it was explained how it was done I chickened out. Just couldn't stand the thought of another sharp implement on my skin. How did I not guess when it's called eye brow blading?????

 Last injection today, and unfortunately back, spine and neck pain hit big time shortly after. Copious amounts of maximum strength paracetamol and ibroprufin got me through the afternoon. I possibly swore it into submission! All good now, but quite a nasty surprise. Wonder what tomorrow will bring?

 Hope everyone else managing ok, this the down  time now for some of us, so let's be extra careful. Mai, Raitchr, how you doing? X

katie11
Member

Re: May 2017 chemo starters

Shame, I'm not on facebook, maybe I'll have to go for it and join x
Raitchr
Member

Re: May 2017 chemo starters

Are you on the Facebook private group, Triple Negative Warriors UK? Lovely group of ladies sharing lots of help and advice, you should join if not. Just contact them via Facebook, they ask about you and your treatment just to protect members then let you join. Maybe see you on there...

Raitchr
Member

Re: May 2017 chemo starters

Yes I am TNBC too. 

katie11
Member

Re: May 2017 chemo starters

Ha Heather I'm interested to see the new routine of wash and go too although still quite sad at the thought of hair loss. It's starting to feel tingly so know it's sooner rather than later. I haven't been told anything has affected me re the NHS hack, sure you will be OK by then. Are you tnbc too? I have my genetic testing in a couple of weeks too , let me know how you get on x
Raitchr
Member

Re: May 2017 chemo starters

Anyone got problems with their NHS Trust being hacked? I have a Genetics appmt on Tues so should be ok.

Raitchr
Member

Re: May 2017 chemo starters

I smoother my legs with hair conditioner to shave as I have loads left and won't have much need for it for a while! I use a new razor each time as have a drawer full and again will be a while before I need them again. Only do them about every 4 days, depends if sun is shinning and I wear summer clothes or slum it it leggings!! It is going to be so much quicker to get out of the house, wash n go shower in about 5 mins instead of having to dry hair and straighten...

 

Heather

Mai7
Member

Re: May 2017 chemo starters

Anniej, if you want the surprised look, like me, have a look on Amazon at the Sodial(R) eyebrow stencil, only 83p!

Mai7
Member

Re: May 2017 chemo starters

Gee whizz Raitchr, now I'm feeling like a primate with the leg hair, you still shaving n'all. I'm going to keep the leg hair though, purely as an experiment! The shaving might dry the skin out and also risk of cutting skin (these are valid excuses). Hey, those steroids really mess up your sleep patterns - I'm still waking up at 3am most mornings! 

Raitchr
Member

Re: May 2017 chemo starters

Hi you could try the +10 manuka from supermarket, it is worth a try. I think the H&B penny sale has just finished. The +10 is good for sore throats so could help. 

 

You could also try warm water mouth wash with 1 cup warm water, 1/4 teaspoon bicarbonate of soda and 1/8 salt.

 

Heather

katie11
Member

Re: May 2017 chemo starters

Thanks Heather, been looking at manuka honey but can only find a grade lower than 10 in supermarkets. Will have to go to Holland and Barrett to have a look x
Raitchr
Member

Re: May 2017 chemo starters

My mouth isn't sore right now, I keep havjng manuka honey in the day but I am also using Aloe Vera  gel toothpaste from Boyes. Plus twice a day after cleaning teeth I use Anbesol liquid from Boots, it is antiseptic and anaesthetic, have always got a bottle in the house as I suffer from mouth ulcers and cankers when run down.

 

Have also heard frozen pineapple chunks and ice lollies work a treat too.

 

Best wishes 

 

Heather

katie11
Member

Re: May 2017 chemo starters

Thanks Mai7 x
Mai7
Member

Re: May 2017 chemo starters

Katie11, the thing which worked best for my sore mouth phase was Gengigel (you can get it in Boots). I also have Biotene gel, mouthwash and toothpaste which is designed to alleviate dry mouth during treatments (I ordered this online from a pharmacy but it's probably available in some high street pharmacies). I also had some ulcer pastels to suck - I'm not sure if they did anything or just gave my mouth a distraction! Also,  eat soft, not too spicy or citrus foods whilst your mouth is sore.

katie11
Member

Re: May 2017 chemo starters

Hi Ladies, I'm day 9 now and have woke with sore mouth today? I've used a tea tree oil mouthwash a couple of times and just wondered if you knew of anything else xx
Raitchr
Member

Re: May 2017 chemo starters

Hi I am wondering about leg hair, I keep shaving them to keep it under control. Think it is head hair that goes first. I keep checking my pillow each morning, my head did feel itchy when I was having my chemo.

 

Re eye brows, I have taken a selfie (very rare for me) so I can see what my brows currently look like for when they go. To be honest I am not that bothered.

 

Wide awake this morning at 5am so may have to reduce daytime snooze today. Last day of steroids today. Nausea seems under control too.

 

Heather

katie11
Member

Re: May 2017 chemo starters

Ha ha , I was lay in bed thinking last night bout where do all the hairs go and I suddenley had an image of being in bed with millions of leg hairs!!!! Made a note to self to shave legs this morning! I did have odd dream last night about my hair falling out, I was like a constant running water thing very bizarre!

As for the eyebrows thing, I has mine semi permanently done a few weeks ago so am hoping I will just need to fill in any gaps but we will see. Anniej is your appointment one of those look good feel good classes? They are suppose to be really good and you get a really good goody bag xx
Anniej
Community Champion

Re: May 2017 chemo starters

Thanks Mai. I am also going to learn how to align my eyebrows . The counsellor convinced me to keep my appointment at a pamper session on Monday . Otherwise known as - get your eyebrows in the right place - session. If we don't there will be a lot of be scarfed and surprised looking people wandering about. Top tip apparently is to get a wig with a fringe that almost covers your eye brows. Now why, oh why didn't someone tell me that BEFORE I bought mine? Drat!😥 

Mai7
Member

Re: May 2017 chemo starters

Speaking of eyelashes reminded me to tell you that I had purchased a plastic eyebrow stencil in case my eyebrows came out and I didn't know where to draw them in. It arrived yesterday and let me tell you, when I held it in position it was a very surprised look! it will work for centering them above the nose for the inside arc but the outer arc will need pure art. Note to self: Brush up on life drawing skills! 

 

Anniej, glad you have realigned your chakras once again!

katie11
Member

Re: May 2017 chemo starters

Yes that is the question we all need to know! !! Where does it go lol xxx

Hope it isn't eyelashes already! I'll just pretend I'm still in denial and say it's hayfever xx
Anniej
Community Champion

Re: May 2017 chemo starters

Sorry, Katie, didn't see post re watery eyes. Counsellor thought mine could be eyelashes coming out, also drippy nose, same thing, hair coming out. But what I should have asked is......where oh where does it all go??

Anniej
Community Champion

Re: May 2017 chemo starters

Hi Katie, managed to get some counselling at Maggies today re germ phobia . She drew a little diagram showing low point days 7-14 after chemo. 

For all you lovely supportive ladies, thank you, you have helped . Big girl knickers on, got rid of that thong. It was making my eyes water! 😱 X

misyangel
Member

Re: May 2017 chemo starters

Thanks Mai7, feel excited in a way to get the first one out the way. 🙂
Raitchr
Member

Re: May 2017 chemo starters

Glad the bird was released, you are brave, I would have not enjoyed having to hold it!

 

Tea was a result tonight, can recommend jacket potatoes for an icky tummy, yogurt and raspberries & blueberries for dessert, washed down with ginger ale! No nausea, no sore mouth and the chemo nurse even phoned to see how I was doing tonight too!

 

Hoping everyone else is doing ok.

 

Heather

Mai7
Member

Re: May 2017 chemo starters

One happy wood pigeon released to freedom leaving two very disappointed cats baffled by the event!  Whilst my partner tilted the fire open just enough I managed to lift the little fellow out, armed with full outdoor coat and leather gloves. Managed to hold its wings tightly against its body and then set it down in the garden - it flew away unharmed pretty quickly. Sigh.

katie11
Member

Re: May 2017 chemo starters

Your funny Mai7! I'd be freaking out waiting for him to come home ( I don'the like birds) ha ha

Wolfee I was given seven days of injections which the district nurse came daily to inject into stomach. They are suppose to keep your white blood cell levels up, personally I wish I didn't have them but at the same time I haven't suffered too bad with side effects? You usually only get told on the day x
Raitchr
Member

Re: May 2017 chemo starters

Yes day 3 for me. The metoclopramide is just a back up, they told me to use Ondansetron one tab twice a day so I take one first thing then at 4pm. Took metoclopramide at lunch just to see me through to 4pm. 

Mai7
Member

Re: May 2017 chemo starters

As if life isn't eventful enough - I can hear a bird trapped and scratching around behind the gas fire in the lounge so waiting for partner to come home and free the poor little thing. (But what about germs I'm thinking! Arghhhh)

Mai7
Member

Re: May 2017 chemo starters

So Raitchr, you are now day 3? So hopefully sickness phase should be over after today...  I think the good old gingernuts are the winning chemo "must have" so far!  Your TCP OJ made me chuckle! I'm on the Metroclopramide for sickness day 1-3 but my dose is one four times a day. I did read in the side effects that prolonged use can cause irreversible involuntary muscle spasms in the face so I got off them as quick as possible, otherwise these spams could have to be botoxed away indefinitely! 

 

WolfEE, there seems to be some variation with the injections but you'll find out on chemo day when you are handed your little home pack. I have five days of them from day 5.

Raitchr
Member

Re: May 2017 chemo starters

Hi all I am much better today, so far. Have worked out a better order of taking tablets today so even managed 1.5 hr snooze this afternoon. Had a cuppa, anti sickness tablet and a few gingernuts.

 

Husband is in charge of cooking tea again but menu is jacket potatoes, salad and cottage cheese for me so looking forward to it.

 

I don't have any daily injections, just 3 days steroids (2 x 2 per day 8am and 12pm), 21 days antibiotics, antisickness which are 10 Ondansetron (2 per day) and 28 Metoclopramide (up to 3 per day).

 

Mouth is feeling fine so far, OJ this morning tastes of TCP. Flat ginger ale is lovely to drink and have Lucazade for later if needed.

 

When I had chemo I had a fizzy nose with the F bit, they did the red E first, then the C then F. They will push the F more slowly via the pump next time to avoid it.

 

Hope everyone else is ok today.

 

Heather

WolfEE
Member

Re: May 2017 chemo starters

Hi Girls,

hope your all doing ok today. Quick question I have noticed a few comments on daily injections!! can i ask what are they and does everyone have them? xx

katie11
Member

Re: May 2017 chemo starters

I didn't much like the injections either williams500. Felt they gave me cramps, sores and bloating. Thankfully have finished them till next time so will see if I still feel the same in next couple of days and can decide if it was them or not x
katie11
Member

Re: May 2017 chemo starters

Thanks for replies ladies, I am day 8 now so will be extra careful. My eyes have been quite watery last couple of days but not sure if anything or hayfever but I do take tablets for these.

Glad it went well williams500 x
Mai7
Member

Re: May 2017 chemo starters

Katie11, I spoke to my oncologist recently and asked about the immune-risk period I.e. Low white blood count. He suggested day 7-14 being the period he considers you should be on full alert for problems (I was originally told day 10-14 but I think the scale kind of slides down slowly from day 2 and everyone is slightly different. So I suspect they suggest day 7-14 to cover the average. My mouth got sore from day 7 to 13 so that could be a good indicator.

 

Williams500, glad to hear you are feeling better. I didn't get any bone pain from the injections but did develop a small eczema rash on my inner elbow the day after completing the course of injections. Could be correlation rather than causation though?

Mai7
Member

Re: May 2017 chemo starters

MisyAngel - wishing you all the best for tomorrow. 

Williams500
Member

Re: May 2017 chemo starters

The treatment wasn't as bad as I had prepared for, had a second when I wanted to run out the room when the nurse started putting the first syringe in and felt quite fuzzy when the clear one went in ( I think that was the E). Left feeling pretty good but did struggle with some nausea last night so just took myself to bed.
Feel a lot better today, went for a walk with my dogs this morning which really helped clear my head and had some toast for brekkie. Feel a bit tired but apart from that I'm ok. Not looking forward to the injection Katie11 as my oncologist said they can cause bone ache? x