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May 2017 chemo starters

treehouse
Member

Re: May 2017 chemo starters

Mai7 is the oxygen expert....something about trees releasing oxygen just before dawn, causes the birds to do the dawn chorus.. If I am lying awake and hear the birds start, I hang out of my window and BREATHE. We have alot of trees ( and noisy bloody birds) 😁 it feels good and really cools me down in tho heat. I believe Mai actually went outside but regretted it 😂 lol
Trisha69
Member

Re: May 2017 chemo starters

Oxygen head shots? x
Trisha69
Member

Re: May 2017 chemo starters

Will ask xx

treehouse
Member

Re: May 2017 chemo starters

Oh Trish, a nurse on Monday advised another patient against Bonjela as if affects platelets or something. I was eavesdropping so didn't quite catch it. Might be something to check. Sorry didn't mean to worry you. X
treehouse
Member

Re: May 2017 chemo starters

Good for you busybee. Please don't feel bad for not feeling bad. It is good to hear happy stories and people coping with chemo. Gives us all hope. I really couldn't walk 5miles. Or manage work . But any other tips welcome. I think we are all finding our own paths through this. Different diagnosis and different treatments. But also different reactions. Support makes such a difference. 😁
treehouse
Member

Re: May 2017 chemo starters

Morning I have been awake since 3am again. 2 oxygen head shots in a week, really trying to spin that as a silver lining. 😒. Sorry to hear you are low Trish. The mouth sounds miserable.I have been eating lots of scrambled eggs, high protein good for cell repair. Also ice lollies to cool and soothe. I agree about the steroid come down. We are here for you. Sending hugs. X
Trisha69
Member

Re: May 2017 chemo starters

Thanks WolfEE, had another coupke of hours, 5 am now and woke in tears.  Guess its as u said just a low point re all the tabs.  I dont even lnow which one are steroids??  AM on day 5 of injecting myself, arent they for bone marrow? x

WolfEE
Member

Re: May 2017 chemo starters

Rosie65 (and your wig) glad you had a nice day and confidence boost with the makeup. I really need 2 get myself booked on one of the feel good days. X
WolfEE
Member

Re: May 2017 chemo starters

BussybeeS - 5 miles that's amazing well done. I've been doing a few hours some days at work now and I have to say it has helped me feel I have purpose again but it does drain me not sure I could walk 5 meters after let alone 5 miles.
So glad your breezing through the side affects 😀 X
WolfEE
Member

Re: May 2017 chemo starters

trisha69, are you still up or managed to get back off to sleep? I'm so sorry your feeling low. I have found both times I've dropped in2 a very low mood around day 6,7 and 8. I'm not sure but it could be some kind of come down off the steroids but I get very low ad negative and feel terrible then all of a sudden it lifts.
I really feel for you with the sore mouth I have been lucky not experiencing sore mouth although I do get gunky mouth and dry throat. I use a special mouth wash a few times a day can't remember the name off the top of my head plus I gargle with bicarbonate soda.
I wish I could do more to help you right now but a mid-night thought and hug coming your way. X
Trisha69
Member

Re: May 2017 chemo starters

Feeling very low, heat doesnt help.  Went to bed at 6pm, sleep for 2 hours awake for an hour and the pattern continues all thru thr night.  My mouth is so sore sore, now have what I assume are ulcers on the inside of my lip.  Roof of my mouth and tongue feel so rough.  Tried honey, mouthwash and bonjela, also on antibiotics for cough.  So darn fed up!  AM on day 6 of 2nd Chemo.

busybeeS
Member

Re: May 2017 chemo starters

Hi Rosie, real boost to the ego for you today! Bet you spent the rest of the day with a spring in your step.
Hi tree house, Mai and all.. I feel a bit of a fraud on here, I'm doing really well Thanks, hate to say it because I don't want to jinx it but hardly any side effects really, just little niggly things that don't last too long. Still working and going out for a 5 mile walk after work each day, though too hot to do that the last few days.
Keep well and hydrated ladies!!
Rosie65
Member

Re: May 2017 chemo starters

Just catching up on all the good news - so pleased for you WolfEE and misyangel

 

The sports day sounds perfect treehouse - well done to your son pulling out the sprint finish when it mattered.

 

I had the look good feel better workshop today, tricky in this heat and they told me the wrong time so I was there for hours.

 

Spent the day at the hospital yesterday too seeing onc and having a kidney function test which took 4 hours. That hospital is becoming my second home. I need to have a clip inserted in the breast (apparently it should have been done at the beginning) to mark where the lump is as the onc is worried that he won't be able to find it soon as it's still shrinking so that was good news.

 

But even better than that the ladies on the make up course thought my wig was my real hair!!  I thought they were joking when they asked if I had just started treatment because I had hair, it's ridiculous how very happy it made me.

 

misyangel
Member

Re: May 2017 chemo starters

Thanks mai7 and treehouse

 

mai7 there was another lady at the hospital today and her veins were In a real mess. You don't realise how many different things can happen from this treatment till you are going through it and I think we all learn something new about this everyday.  I love this forum how we can all share our side affects and give advice

Mai7
Member

Re: May 2017 chemo starters

Hi MisyAngel, glad your lump is stable as its always hard to decide if it's changing or not.  The arm pain, I have that in my lower left arm from my first chemo (my last two have gone into my right arm t give the left arm a rest), it's known as cording. If I stretch my arm up I can feel a painful pulling sensation like there is a cord in my arm which won't stretch. Apparently this usually goes away some time after chemo but can take a while. I read somewhere that the physiotherapy for it involves a "Chinese burn" twist to the skin which can be very painful. Massage sounds preferable!

treehouse
Member

Re: May 2017 chemo starters

That's great news misyangel. Today keeps getting better. I got a lottery ticket today. Why not? 😉
misyangel
Member

Re: May 2017 chemo starters

Wolfee that is fantastic news what a relief.


I have just got back from review before next chemo on friday and I have been having some pain in my right arm and apparently it is the veins,  she said to massage that arm and it should ease off.  Really don't want the pic line put in so hoping they hold out for the next 6 rounds.

She examined my lump as I was worried it was getting bigger but she said she couldnt feel the lump and it was the tissue around where the lump was so that was a relief.

 

 

Mai7
Member

Re: May 2017 chemo starters

MJK, I'm just trying to translate your hieroglyphics and so far I've come up with:

feet into pot, pot onto head, head becomes cool, cool causes sleepiness 😂

 

Hi busybees, hope you are doing well.

 

treehouse
Member

Re: May 2017 chemo starters

Like your style MJK.
Hi Busybee how you doing?
busybeeS
Member

Re: May 2017 chemo starters

Looks like everyone has reason to celebrate. Great news WolfEE. Really please for you.
MJK
Member

Re: May 2017 chemo starters

No, it's a relieved sleepy one. I now have my feet in my son's paddling pool and a Becks Blue in the fridge for later.
treehouse
Member

Re: May 2017 chemo starters

Is that a sad face MJK?
katie11
Member

Re: May 2017 chemo starters

Fab news wolfEE! !! Xx

Hope you are feeling OK after round 3 Anniej x

MJK peppermint lotion sounds lovely and cooling for anywhere might give it a try x

Glad you got to see sports day treehouse, silver linings and all! Xx
MJK
Member

Re: May 2017 chemo starters

Mai 👣⚱➡💆➡😎😴
Mai7
Member

Re: May 2017 chemo starters

WolfEE, that's fantastic news, I'm so pleased for you. It must be such a relief. 🎉

 

Treehouse, so lovely that you have been able to spend time seeing your Son on sports day. I know I always enjoyed watching mine back in those days. These are very happy memories. 🏅

 

MJK, now we haven't established for sure that the foot cream was in fact put on your head. Does rubbing it on your feet also sooth your scalp or did you in fact put it on your head?! 😂

MJK
Member

Re: May 2017 chemo starters

That's great news WolfEE. Must be a huge relief to know the new lump's ok and the bad is shrinking. Just had the PICC dressing changed. I haven't had any issues with it and it makes chemo day much easier. The thought of it is far worse than the reality . Hugs x
treehouse
Member

Re: May 2017 chemo starters

Fantastic news Wolfee. So glad the new lump is not a naughty one and the known naughty is responding to treatment. It really makes a difference to how you cope with side effects etc. I have been having issues with veins too. No one has mentioned a line yet and although the idea freaks me out I know I would do as I was told. You will do it and it will be for the best. We are stronger than we think we are. Sending happy hugs.😁
Today IS a GREAT day!
WolfEE
Member

Re: May 2017 chemo starters

Well done Callum 🙂

Back from hospital.

It's working 😀 New lump not cancer and original area has shrunk only a tiny bit bit is smaller, bring on the side affects now I know it's working I can suffer them all. Omg this is a good day.
Also was advices today that I should consider the pic line especially as I had the funny hand Expedia ever this time around. They can't fit it this week (low immune week) so would be next week b4 next session so I have a few days to change my mind but have agreed that I will give it ago!!!!!! My stomach is turning already but equally the thought of the cold weird hand feeling again is also just as unappealing
MJK
Member

Re: May 2017 chemo starters

Having his mum cheer him on made all the difference. Great you could be there. X
treehouse
Member

Re: May 2017 chemo starters

Foot 👣 lotion on head????
Why not?
😂
MJK
Member

Re: May 2017 chemo starters

Confession time. I was putting peppermint foot lotion on my feet last night to soothe and cool them down. My scalp was itchy... 🤔 It worked a treat! 😎
treehouse
Member

Re: May 2017 chemo starters

Best sports day ever!!!!! I sat at the back on a blanket with an umbrella clearly giving off ' keep away im in quarantine ' vibes. He did well in the sprint 3rd. His team won the relay and i am so glad I stayed till the end as he was coming second in the marathon. Then in the last 5m overtook Callum to win. Proud marshmallow mummy burst into tears. Hopefully the dark glasses and big sun hat hid my embarrassment. Now home to rest and keep out of the sun. 😁
Trisha69
Member

Re: May 2017 chemo starters

Didnt have Acne, just felt a bit itchy, cream is great and have shaved all the little bits of hair off so now look like a beautiful Kojak 🙂

Mai7
Member

Re: May 2017 chemo starters

Anniej, sorry to hear you've not been doing too well and I hope things improve for you. Sending you a hug. {U}

 

Treehouse, hope you have a fab Sports day. Hooray for silver linings!

 

Katie, I think you'll have mambo no.5 now while ever there is a little bit of chemo in your life!

treehouse
Member

Re: May 2017 chemo starters

Hi Anniej. Sorry to hear that you have had such a tough time. Hospital admission sounds scary. I am really glad onc is doing his best to find alternatives. We never know how our bodies react. Sending hugs. Keep strong. Glad round 3 is better for you. X
treehouse
Member

Re: May 2017 chemo starters

Morning all. A good sleep considering heat and steroids. I think yesterday wore me out. Feel a bit like a hang over today but without the headache. ( and big night out). Just a but shaky and grumbly tum. Going to try to watch my youngest son's last Sports day this morning. Never been to one before as I have always been at work. ( silver linings). Will take blanket, umbrella, sun hat and water and see how long I last.
katie11
Member

Re: May 2017 chemo starters

Big hugs today wolfEE thinking of you x

Hope everyone's feeling OK today after another warm night. I've still got mambo no. 5 in my head! Wonder if it's gonna appear every time I log on ! Lol x
Anniej
Community Champion

Re: May 2017 chemo starters

Well, Treehouse, that's certainly a heaping helping of freebies ! No where as good oop north, but can't complain re meds. My best freebie is the Aveeno cream which seems to work for every where. Scalp to toes and all landmarks in between. 😍

I've just had third EC chemo at a reduced dose as I'm not tolerating it very well, ( two doses and two hospital admissions) and so far so good. My Onco is also not letting me have the T part and is currently researching a comparable , gentler version to get me through. Anyone else had their T changed? 

 

Trisha69
Member

Re: May 2017 chemo starters

Hi Treehouse,

scalp just felt itchy, heat doesnt help but the  cream is very soothing. x

Mai7
Member

Re: May 2017 chemo starters

Trisha, it's strange how our idea of goodie bag has changed. Managing side effects is the new pampering! I've been rubbing pure tea tree essential oil over my scalp then shower it off and it seems to have calmed down. It should kill any bacteria in the irritated follicles.

 

Katie, Rosie, I try to imagine what everyone looks like too but you just know you create characters in your head and then if we all saw each other we'd be totally surprised, like when you read a book and then when you watch the film later it's different!

Mai7
Member

Re: May 2017 chemo starters

WolfEE, I'll be thinking of you tomorrow and sending positive vibes your way.  💃🏻

 

Katie, yes, heartburn. I seem to get it worst in the first 2weeks then it goes away for the last week. I take Omeprozole for it during that period, otherwise it can be quite painful and makes my diaphragm spasm and hiccup!

treehouse
Member

Re: May 2017 chemo starters

Hang in there Wolfee. I understand your nerves but its the not knowing that is difficult. As soon as you know then you can have a plan and keep fighting. You are kicking ass remember 😁. Good luck tomorrow sending positive vibes x
Rosie65
Member

Re: May 2017 chemo starters

Ha ha I now have an image of all these bald women up and down the country dancing round singing the new lyrics to mambo no 5

 

Have also tried to picture you all - bit interesting to see how accurate we are!!

 

Wolfee - they do say that we are usually the first to start thinking that it is actually working, so that's a good sign. Keeping everything crossed for you tomorrow

 

katie - saw the oncologist today and he also said that paclitaxel is easier to tolerate and not as harsh as EC. He said he saw no reason why I couldn't work from home even on weekly - not sure I want to now though!

 

treehouse - you definitely have gold standard goodie bags!

 

I don't seem to have any problem with my nails at all - maybe it's the f bit of fec that does it

 

MJK
Member

Re: May 2017 chemo starters

WolfEE that sounds like a good evening. I'll be thinking of you tomorrow. Big hugs. X
WolfEE
Member

Re: May 2017 chemo starters

Menthol scalp cream now I have genuine envy

I have just been in the garden with my feet in the paddling pool has cooled me down nicely. I'm now about to have some almond oil rubbed in2 my head by my sister and watch eastenders followed by last nights poldark with a four cheese pizza.

I've felt down all day and nervous about tomorrow's scan it's my follow up scan on the 'new lump' that appeared since starting treatment so tomorrow I'll know if I'm responding or treatment changes?? Only this evening have I suddenly felt some hope that it maybe working (and it maybe) the last two weeks have been a killer assuming the worst and the horrible not knowing and wait.
treehouse
Member

Re: May 2017 chemo starters

Trish that sounds cooling what are your symptoms. Now the acne has gone, I am just a bit scabby.
Trisha69
Member

Re: May 2017 chemo starters

I thought goodie bag, meant goodies!!! 

Was given similar things by the Cancer Unit and as an extra thru prescription some wicked cream for my bald itchy scalp. Menthal aqueous cream.. (Very soothing) x

treehouse
Member

Re: May 2017 chemo starters

My goodie bag contains💼:
Mouthwash x2 benzydamine & Difflam ( I have not used either yet)
Anti sickness x3 Emend ( 2 days) Ondansetron (3 days) & metoclopramide (when needed)
Heart burn -Omeprazole
Painkillers - co-codamol
Diarrhea - loperamide hydrochloride.
Steroids - dexamethasone (3days)
Injections - filgrastin (7 days)

Correction 2 bags!!!
treehouse
Member

Re: May 2017 chemo starters

Mai, my nails sound like yours. Dark mulberry nail polish 💅 this week helps hide it and it doesn't seem to be getting any worse. Will be ordering that oil tho. 😁
treehouse
Member

Re: May 2017 chemo starters

Katie I am treated at Worcester royal hospital and really can't fault the care I am getting.
I also try to picture you all and met two bc women today. Wondering if they could be any of you. You have taught me about FEC -T for a start. 😁