May 2017 chemo starters

[Mai7]

Let me set the record straight. My tongue is not as bad as the picture. Mine is a bit white in places with the black looking more like staining on the tongue - in the pic looks like black moss. He's got a garden growing in there! 😂 🃏 👅

[treehouse]

Lol 😂It's actually called ' black hairy tongue '
😝😝😝😝😝😝😝😝😝😝😝😝

[Mai7]

Why do I always get the most minging things to deal with like a black tongue and that hedgehogging procedure - that was gross! Here's an article on it with a little cringeworthy picture too:  http://www.mayoclinic.org/diseases-conditions/black-hairy-tongue/home/ovc-20322252  

WolfEE, sorry to hear you have gone off balance again, it's a very miserable feeling.  Make sure you keep putting the sudocreme on for bacterial protection.  Try also dried apricots if you like them (to eat not to put on the bum lol!) 😂

[Rosie65]

Hi all - had the most wonderful sleep last night, a good 9 hours. That's what treatment and no steroids does for you and not giving in to a day time nap.

treehouse - enjoy your weekend by the sea, so nice to get away and I'm sure it will set you up nicely for your final treatment

Jay - I'm feeling ok thanks although the dreaded sore tongue/mouth has set in this morning. It didn't really clear up last week so another dose has caused it to set in with a vengeance. Run out of mouthwash so off to the chemist to stock up.

Psychologically it must be so much easier to deal with the SE's when you know it's the last time

Mai - love Derbyshire, had relatives in Chesterfield so spent many holidays/Christmases there as a child.

Re hair - I have the peach fuzz plus long strands from the bits that didn't fall out initially. I didn't ever shave my head. The long bits are now growing and new growth is white. It's growing more on one side than the other so I look very strange without my wig!   Bit like my 89 year old dad ha ha - I think I could probably manage a "comb over" look.

[treehouse]

Not fair Wolfee. ☹️
Are you taking painkillers as nurse said some can bung you up too.
Cereal or granola usually get me back to toothpaste 💩

[Jay68]

WolfEE - try some prunes or prune juice for now - more of a natural remedy. Just by chance, you're not taking any anti-sickness meds are you - as they can cause it?

[WolfEE]

I also have a light fluffy covering of hair (still bold patches) but the hair is really coming now. I'll be deviatated if it does start coming out again. All my bottom lashes have come out and I have a tiny few left at the top

[WolfEE]

So the dreaded constipation has come back and totally ruined all the healing of my fissure problem I'm in absolute agony again. So I've had over a week of diarrhoea and now opposite!! I'm worried 2 take the laxatives or softener drinks because this 'T' normally causes me diarrhoea and now day 2 day I don't know what way it will go????? I'm on day 12 so can't be the steroids

[treehouse]

Mai not wishing to offend but your tongue sounds minging 😜.
I read somewhere that the steroids make us more susceptible to fungal infections, I hope it clears up soon. Take a few selfies sticking your tongue out to show us next May.

[Jay68]

Another idea Mai - sleep with your tongue out and see if the hairs fall off on the pillow!!!

Also, I've attempted a personal message - let me know if you receive!

[Jay68]

Good morning ladies - well so far so good for me - taken a Lansoprazole for the heartburn problem I usually get for first 3 days and the steriods (last lot today - hooray)!  

My mouth is feeling OK - but I'm not holding my breath too hard..... !

Mai - the black hairs add a whole new dimension to sticking your tongue out to offend!  Soon as I read this I checked on mine!  I may personal message you if I can find out how to do it!

Heather - glad you're doing well.

Treehouse - too much healthy veg - you need stodge remember!  Enjoy your caravan break - I'd have been tempted to get the new pj's to wear!  

Rosie - hope you're doing OK after yesterday's treatment.

Trisha - hope you're doing OK.

To everyone else - hope the sunshine forecast for the next few days helps you enjoy the good and not so good days x

[Mai7]

Raitchr, I'm back on the Fluconazole since yesterday, my tongue has black fur on it now. I googled, it's a harmless fungus but looks quite disturbing.  I did wonder if the hair loss could be my old hair naturally falling out as it gets replaced with peach fuzz. The fuzz is still growing on my bad patch.  Glad you are feeling peace of mind from the chemo now.

Treehouse, have a fab time in South Wales. My daughter took her first toe dip in the sea in Tenby and was completely horrified. Very fond memories. 

[treehouse]

Hope you have a couple of good days before the side effects hit ladies. May they be manageable. ( I somehow think knowing they are your last will help you cope)
Well it is a glorious sunny ☀️ day here. We are packing 👜 this morning. I have onc appointment at 4:30.
Then we will bundle all 4 kids into the car 🚗 and head to a caravan 🚌 in South Wales for a weekend by the sea 🌊 . I can't wait 😊 🎠⛳️🍦🌤🦀🕶😎💃

[Raitchr]

Morning ladies!

Slept from 10pm to 5.30am on steroids, had the first lots of meds and a cuppa then slept for 1.5hrs. Up now for 2nd meds and breakfast.

Mai, I found that any hair I had left from my final 0.5 grade buzz cut on FEC fell out as new hair grew in at same time on T.

Best wishes everyone for limited side effects this time. I started Fluconazole tablets yesterday for furry tongue & oral thrush so will let you know how I get on.

Can't explain what it feels like to be done with chemo, except it feels like a weight has been lifted from my shoulders, such a great feeling to sleep again !

Heather

[Mai7]

Jay, I'm not too far from Winster. If you want to discuss further drop me a private message. 📩

Treehouse, sweet potatoes are a very fibrous and healthy veg which is usually great but Docetaxol says "no, not so great, give me the thick starchy white potatoes". 🍟

I slept from from abou midnight until about 5.30am which is a good nights sleep whilst on steroids! More hairs on my pillow this morning though. Yikes! What's happening?! 👽

[treehouse]

Agreed. I think it may have been the sweet potato and spinach risotto I had for lunch. Too much healthy veg

[Mai7]

Treehouse, that doesn't sound like a combo which would upset your tummy, unless the leeks went through you.  Probably coincidence. I think a fruit pie might be more risky. Everyone loved it so wow, your new "good life" strategy is in the making! 💪🏼 👒 🌳 🍐 🍒 🐣 🐓 💩

[treehouse]

Mai - chicken leek and bacon. Boys favourite so I thought I would try and make my own. Went down a storm.

[treehouse]

💨
🌬
I hear you Jay.
Windows open and sleeping in my knicky knacks noos- too hot for pjs

[Mai7]

Jay, this is for the hot flush: 🌬  🍃  💫  ❄️  Lovely choice of slow song btw. 😍

Treehouse, what was in the pie?

[Jay68]

Hey ladies - Please blow gently in my direction .... these hot flushes really are something else tonight!!  Temperature OK though but got it beside me for checking! 

[Jay68]

Rosie65 - lovely to chat with you too! I've always wondered when I've been sitting there if anyone was on the forum and it just amazed me so much when you asked if I was Jay! I hadn't seen your earlier message on here - had I done I may not have been so shocked! But I'm glad you made yourself known - it was lovely to put a face to a name and it's amazing we were in Crawley together too! Take care and I hope you continue to get through the remaining weeklies trouble free. x

[Jay68]

Looks nice MJK - I'm in! Food sounds yummy too!

[Jay68]

Homemade pie - my fav - I don't think it's your cooking that caused the friendly D just a nasty coincidence! x

[Jay68]

Mai - caravan of love - just brought back a lovely memory for me - that was the first slow song my Husband and I danced to a lot of years ago!!

WolfEE - the thought of you letting out a little howl every now and again makes me laugh - I think you really should do it and let us know the reactions you encounter!!!!

I'm up for the meet up - it will be great fun!

Sorry, I've been looking at our locations and someone comes from Derbyshire - where abouts in Derbyshire - I've got friends in Winster and we're up that way on 16 September for a family wedding!

I really love this group - don't know where I'd be without it!

[Mai7]

Love it MJK, the Caravan restaurant that is!  Now I'm thinking of the Housemartins song "caravan of love". There's a song for every occasion!

WolfEE, lol howling at chemo! .....I used to be a weir-wolf but I'm alright nowoooooo! (The old ones are always the best)

[Rosie65]

Ha ha MJK that would be perfect!!

[treehouse]

Love it MJK.
Well I was just about to share the fact that I cooked the family my first ever pie ( I am not much of a cook) only to spend the last 10 min in the loo 💩With my old friend D.
Really hope it is a coincidence not my cooking ☹️

[MJK]

So I randomly googled to see if there was an eating place in London called The Caravan.
There is! It's on Bankside so fairly central.
http://www.caravanrestaurants.co.uk/bankside.html
Just a thought... 🚙

[katie11]

Treehouse I had the same thought about wolfee howling! ! Ha . I've been using E45 thanks looks like I'll have to stock up!!

May pj reunion it is then x wolfee will you howl when you walk in lol xx

[misyangel]

I am in stoke-on-trent and would defo be up for a meet up next May

[busybeeS]

Heather, I'm sure you're chuffed to be finished. Are you planning on going on a moving forward course? I've heard they are pretty good but I don't know how well they fit in if you are working.

So pleased every one who was in today had their treatment without any issues. Rosie and Jay - great that you managed to pluck up the courage to speak to each other!!

I've started to see more hair growth on my head - still not very thick - even though I've been on FEC the whole time. Didn't expect to see any until October. I'll still be shaving it until I know there's a good coverage!!

[treehouse]

😂😂😂😂😂😂lol
Seriously laughing my head off at the thought of a lovely lady having Chemo and barking like a wolf 🐺 randomly when people walk in.

[WolfEE]

On my next chemo I'll do an occasional Wolff sound just incase any of you are in there??? Or I'll just put the pj top on 😂

[WolfEE]

I'm totally up for a 1 year anniversary meet up in my pjs I'm already looking forward 2 it.
I'm in Milton Keynes

[MJK]

Congratulations Jay 🔔 and Heather 🔔. Well done on another round Mai and Rosie.
I'll look for caravan pjs next time I'm in Sainsburys (although my current pair are a bit flower power).
Love the idea of meeting up next May. I'm in Bracknell and have my chemo a mile from home which is fantastic (sympathy to Trisha - I know Devon is a nightmare in that sense). So close to Reading. Tatyana have you linked to the Berkshire Breast cancer support group on Facebook?
Hope everyone has a good weekend. X

[Trisha69]

I'm in Devon. Treatment at Exeter x

[Mai7]

I think a May pyjama meeting would be great. I live in Derbyshire.

[treehouse]

Katie I had terrible skin the first couple of session. E45 saved me.

[treehouse]

I am in Worcestershire.
Hot air balloons for me please will order asap.
Seeing as we are May starters can I suggest a 1 year anniversary meeting next May?

[Raitchr]

I am near Grantham, Lincolnshire but treatments were Kings Mills Mansfield and Nottingham City as GP is on Lincs/Nottm boarder.

H

[tatyana]

Rosie and Jay, how brilliant that you met! Hope it goes well for both of you and the SEs aren't too bad.

I'm investigating those pj's. We have a caravan, well, a camper van actually, so you can guess which ones I'll go for.

Anyone in Reading/Oxfordshire? If so, I'll stock up with carnations before my next chemo, which is 1 Sep. Can't believe September's nearly here. Where did it go?

Feeling good today as have just had a nice lunch with two dear friends who drove 2 and 1/2 hours (each way) to come & visit us. Lovely to see them. Tomorrow we're off in the camper van for the holiday weekend, all being well. I've done my homework and know where to find the nearest A&E, which I definitely do NOT intend to need!

[Rosie65]

It was so lovely to meet you today Jay!  There were a couple of posts which made we wonder if we were in the same location but I wasn't sure.  Mention of the Olive Tree centre and 30 mins from the seaside. Would have been easier to spot you if you'd been wearing your hot air balloon pjs!!

Mai -  all being well I have four more weeklies to get through, hoping to finish Thurs 21 Sept. I think it would be a great idea to meet up once we've finished treatment.

katie - skin has been ok on my face, have had some peel off on my feet but nothing too bad.

No steroids this week so am feeling tired, trying to stay awake now so I'll sleep tonight.

[katie11]

Can all wear our caravan pjs!!!! Lol x

[katie11]

That's so nice Jay! Least it wasn't another one of us whose name isn't obvious! Lol x

I'm Greater Manchester . Don't think any of you are near me x

[Jay68]

Treehouse, I would willingly have put a carnation in my pocket if I'd read Rosie message from earlier this morning I wouldn't have felt so shocked!! I thought my reputation has finally caught up with me!   PJ's in London - hey I'll have to get my figure back for that one!!!!!

[treehouse]

Meeting would be great we could all wear pjs 😂😂😂😂

[Jay68]

It was amazing ladies - Rosie looked over at me and asked "Are you Jay" - I was like yes?!?! - and she then announced she was Rosie from the Forum - WOW - I simply couldn't believe it! - We more or less started our treatments at the same time with our FEC/EC combinations - at Crawley Hospital and now we're at East Surrey Hospital in Redhill.  Once over the shock of meeting - we discussed pj's - of course!!

I live in Horsham.  Which is 15 minutes drive from Crawley a little further to Gatwick and about 30/40 minutes drive to Redhill  An hour on the train to London.

I'm interested to hear other's locations!

[katie11]

That would be nice mai! When we all have ever hair again lol! I ordered some caravan pjs too!!!!!!

[Mai7]

Well done Jay, just a few ugly side effects and you're done. Such a good feeling, I expect. Keep in touch and let us know how things are going for the rest of your treatment.

Rosie and Jay, real friends now not just chemoji friends! How did that happen? Supercool!

Im still introverting as an chemoji for now but it would be great if we could all meet up when we're all finished with active treatment. Locations? Probably London is the most easily accessible for everyone by train?

I just ordered 2 pairs of Sainsburys caravan PJs!