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June 2018 Chemo Starters

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Re: June 2018 Chemo Starters

Hi all, well still feeling rubbish here, mouth is so so sore, hospital gave me Difflam and Nysticin (or something) but its so painfil.  I h av to see gp today for flucozonale so hope that helps.  Just hopjng that being forewaned and prepared next cycle i can prevent this getting so bad.  On the plus side no nausea tho!  The flu type aches are manageable with painkillers, although thr bones in my face ache... Weird!  My advixe ladies is make sure you have painkillers, mouthwash and meds before you have T and start them as soon as you can.  Not sure ican face another 2 lots of this but as always we have no choice.  I hope j get some good days soon feeling very sorry for myself 😔

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Re: June 2018 Chemo Starters

So sorry to hear you’re feeling so bad Kip.  What horrible SEs!   I do hope the hospital can offer some useful advice and you soon feel better.  

 

Good luck to everyone starting T this week.  I have my last AC on Tuesday and after a lovely break away I’m starting to feel super anxious.  I felt constantly nauseous for the entire week after the last dose.  It was horrible and that was with all the anti-sickness meds and taking steroids again albeit at a lower dose.  I just hope my oncologist can suggest some alternatives when I see her tomorrow.  I’m also thinking of asking for a slightly lower dose of the chemo drugs as this was suggested as a possibility when I rang the chemo hotline.  

 

Hope everyone can have a relaxing evening.  Sending hugs xxx

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Re: June 2018 Chemo Starters

@LJ Ah, it was you! Thank you -- it's fab.
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Re: June 2018 Chemo Starters

2 days post T x 3.

Blood sugars completely back to normal. The intravenous steroids still being much better for me than the tablets. Still side effect free. 11 weeks down chemo wise, only 9 weeks left to go. Still haven't heard from the hospital with a review on the blood thinners following the clot in my arm. Managed to get some more injections from my GP but told they won't prescribe any more which leaves it to me to once again chase the hospital because as usual, nobody there can do their job right. I was meant to be reviewed "within 30days" 6 weeks ago. H
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Re: June 2018 Chemo Starters

Got my first T on Wednesday too and am feeling very apprehensive. Much more so than before my first cycle of FEC. Guess it's the fear of the known coupled with the fear of the unknown. Also start my Herceptin injections on Wednesday so we'll see how they treat me.

 

Got my dark nail varnish which I'll do on Tuesday. Going to start salt water mouth washes tonight to try and avoid too many mouth problems. Need to stock up on paracetamol and up my fluid levels over the next couple of days. At least it won't be as hot this cycle as it was for the previous two, surely that's got to be better?!

 

Glad some of you have found the overnight All-Bran effective - you can prepare about three days worth in a go and keep them in the fridge. Last time I had it on chemo day and for three days after - along with Senna tablets and copious amounts of waters it kept everything moving well!

 

Hope you get some relief soon Kip.

 

LJ

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Re: June 2018 Chemo Starters

So sorry to hear you are feeling so rough Kip. Really not looking forward to my first T on Wednesday! Kx
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Re: June 2018 Chemo Starters

Oh dear the T train has hit!  Last night the achea started...  Feel like i have been hit by a truck, mouth si sore and disgusting feel so fedupwith this.  Waiting for hospital to call back re thrush,  hope this doesnt last for ever!  

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Re: June 2018 Chemo Starters

Hi Kip

 

Someone I met at Haven suggested Daktarin mouth gel when I explained I was getting a very sore mouth each cycle.  I just bought it over the counter at my local pharmacy.  It’s anti-bacterial and Nti-fungal and I think it can be used for oral thrush.  It seems to have helped and my mouth hasn’t been as sore after I used it for about four days. I used it in conjunction with daily salt water mouth washes.   Hope it clears up soon.

 Senekot generally works for me for constipation.  

 

Take Care Clare x

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Re: June 2018 Chemo Starters

Kip ☹️To hear you might have mouth thrush, get fluconzole and might be idea to ask for it every cycle with your onc when you pick up other meds before cycle, I used to go in with big list for my onc, antisickness meds, fluconzole, difflam the works, if you don’t ask you don’t get and then you’ll have your box of tricks to get you through the cycle 👍👍👍you are all doing fantastic ladies and keep focused and keep 😁😁😁😁 and don’t forget to have a steroid induced online shopping spree, when oh’s go 🙄🙄🙄day the steroids made you do it 😁😁💕💕Shi xx
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Re: June 2018 Chemo Starters

I'll try that recipe thanks
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Re: June 2018 Chemo Starters

Thanks ladies, have been to see pharmacist today they said use lactulose for constipation.  Unfortunately I think I now have mouth thrush, big white sore tongue but pharmacist couldn't give me anything without prescription...so have difflam for now and will speak to hospital tomorrow.  If it wasn't for that I would be feeling fine..  grrrr

 

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Re: June 2018 Chemo Starters

Hi ladies 😘😘for botty backup various things that have been used senikot, movicol, prunes ensure you are drinking 6-8 cups of fluid a day too 😘😘💕💕Shi xx
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Re: June 2018 Chemo Starters

@Kip Senna does work for me -- too well, actually, so I try to avoid it.

 

I've also found the following helpful: 1) upping water intake considerably; 2) prunes (and I *hate* prunes); 3) dried apricots -- but in quite a quantity; 4) the All-Bran parfait that another person suggested on the boards -- I think earlier in this thread, actually. 

 

Note of caution: I combined 2 and 4 in cycle 1 when I had steroid-provoked back-up, and that was... too much  intervention. 

 

The All-Bran parfait, so you don't have to read through pages and pages of posts: 50g All Bran, 100ml almond milk/drink, layered with fruit and yoghurt, and refrigerated overnight. 

 

I'm noting Macrogol for the future, though, as double the steroids starting with my first cycle of T(PH) in September is surely going to have double the effect on my body.

 

p.s. I also eat a fairly high-fiber diet (veg and fruit), but it isn't enough.

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Re: June 2018 Chemo Starters

Hi Kip. Get your GP to give you Macrogol. Some people use Senacot, but it doesn’t work for me. Kx
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Re: June 2018 Chemo Starters

Hi, glad your T went well Sally, it is somehow less stressful having just a drip than sitting watching poison being fed in isn't it?  I'm feeling ok day 6, sore mouth the worse se so far, might try some Diflam as people say that helps.  Taste odd but pretty much like FEC, it have slight achy legs but not bad enough for painkillers and I find if i get up and do stuff it really helps get them moving, I've managed to walk few miles every day which perks me up.  I wonder if the fact I don't have those injections helps with that?  Steroids finished yesterday though so have to wait that joyful bit out.. hopjng j don't get the big downer again.  Thumb nails felt slightly sore yesterday but no worse and I think am looking for things at the moment... It's the unknown all over again.  Just ticked off another day so 37 left till last T...  Hubby said he will get me an early advent calendar for the last 25!!  

Have a good Saturday all .Kip xx

Ps constipation..  what does anyone find works well?  

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Re: June 2018 Chemo Starters

Not out as late as I thought. Done and just waiting for my son to collect me. From about 4.45 I was the only one left in the department. Thankfully the next 3 weeks I'm back to being booked first thing in the morning. It actually went really quickly today as I had a nice sleep for the hour the T was going in.
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Re: June 2018 Chemo Starters

Thankfully my weight has been more or less consistent all the way through. It fluctuates by about 3/4lb but that's normal.
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Re: June 2018 Chemo Starters

Good luck today Sally. Hope it all goes ok. My first T on Wednesday. Steroids start Tuesday. I’ve been constantly hungry this cycle and have put on several pounds so not looking forward to the additional effect that steroids will have. Kx
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Re: June 2018 Chemo Starters

Morning,

3rd T for me today. Downloaded 3 new books to keep me going with all the waiting around. Got to be there at 12 ish for full blood count before chemo at 2. Home about 7 if I'm lucky. Thankfully still no side effects.
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Re: June 2018 Chemo Starters

Hi all, day 5 post T,.  So far not too bad, tongue sore and bit white but much the same as FEc.  Slight leg aches in calves but not had enough to need painkilkers.  No nail pain or foot  pain yet.  Of .course still on steroids so could be anything waiting roundr corner, last steroids today and now starting anti biotics today too but just glad to be 5 days in and still working and walking!  Still having sweats too but better sleep last night.  Hope everyone else ok today xx 

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Re: June 2018 Chemo Starters

I'm still getting random chin hairs too that I have to pluck!
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Re: June 2018 Chemo Starters

Hi Kip I’m from the May chemo starters and had my 2nd docetaxel on Tuesday after 3 FEC. We ladies on May thread have been discussing the horrid sweats over the last couple of days- just to reassure you they appear to be just another lovely side effect. Share your frustration with steroids - I’m so fatigued but sleep has been awful- all I can do is rest - desperate to go out for a walk to help but just too fatigued.
Hope you have a good day.
Jem xx
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Re: June 2018 Chemo Starters

Oh no poor you!  Thought the underarm hair situation did make me smile... .why can nothing be straight forward.  I still have leg hair too... give us a break BC!Smiley Mad

 

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Re: June 2018 Chemo Starters

Morning.

Had physio yesterday and although I now have a good range of movement in my arm and shoulder it's still really tight. Massaging and moisturising couple of times a day but each day I get up and it feels like back to square one with the tightness. This is 4 months post surgery FFS!

And to add insult to injury I have no hair under the right arm but the left where the scarring from ANC is, full hair that I can't shave. Still also have leg and arm hair too.
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Re: June 2018 Chemo Starters

Hi all, just dropping in to report on day 4 of T cycle...  so far not too bad but still lacking sleep from those bloomin steroids, now down to 4 a day until tomorrow and then none.. so wonder what will happen then... tears and more tears I expect... watch out hubby!   Apart from the sleep problems, so far so good, mouth a little sore and taste slighlty weird, although still hungry, not much different from FEC.   No bad aches and pains but that could be coming or be becuase I don't have the injections to give?   Fingers and toes ok, no pins and needles or painful nails yet but by this time next week who knows what will be happeining.  Main thing is hot sweats, not sure if thats hormones or chemo but they aren't painful .  Making myself get up and do stuff so have been out on 3 mile walks each evening and it does help and back at work today, only at home but its something.   Hope everyone else is doing ok, Embolorry hope you are coping with those last injections, l think you shoudl be finished them now so perphaps the pain will subside now?

 

Take care all

Kip xx

 

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Re: June 2018 Chemo Starters

I generally take my kindle and read through chemo. Downloaded a new book last week and nearly finished it. The battery went 2 chapters from the end, so annoying.

Today is physio day. Still have massive problems with tightness on the surgery side, especially where I had the node clearance. Despite doing exercises daily every morning it's still as tight as just after surgery even 4 months later.
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Re: June 2018 Chemo Starters

Hi Kip
I know what you mean about the doom and gloom patient. There’s always one! I must admit that the first item out of my bag on treatment day is my iPad and earphones. I basically shut myself off from any communication apart from a smile and hello. It might seem anti-social of me but I really have no capacity to empathise with other patients. I’m in full self protect mode!
Hope your arms are better Kellie.
Jacq x
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Re: June 2018 Chemo Starters

Oh dear kellie, hope the arm is improving today, when I thought I wouldn't get my treatment this week I was torn between phew and oh no... But it will happen and they are making sure you don't suffer any extra.

CDC my chemo unit is very nice, been refurbished not too long ago so very light and airy,. Ice coloured comfy recliners so a bit like a front room but j always find the depressing person to sit near too, and she's due at me next one too...  must confess I can't quite get her doom n gloom out of my head this week.  Still feeling ok from T slightly sleep depraved from xsreroid but mouth pretty good and no aches yet!  

Embo.. I would love a swim too had bought a new mastectomy cozzie ready and didn't realise couldn't use it... We can't swim with chemo can we?

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Re: June 2018 Chemo Starters

Sorry to hear that Kellie, I know what it feels like to think that you can’t get the planned treatment. I am sure that you’ll be fine next week and you’ll get back on track.
Can you do something nice this week? I tell you what since having my PICC line I really wished I had swum more before I got it!!! Everyone (including doctors) keep telling me what brilliant exercise swimming is and I haven’t Veblen able to do it firstly cos of the mastectomy and then due to the PICC line!!!!!
Anyway hope you can find something nice to do this week to take your mind off it all,
Sending hugs,
Em
Xx
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Re: June 2018 Chemo Starters

Hi all
Was due my 8th weekly paclitaxol treatment on Monday but I developed a skin reaction on both hands and up both arms.. it's a patchy red rash that was very hot to touch. Overalll all my bloods, temp etc were fine but they were concerned that having my treatment would make it worse and also as i am still waiting for a picc line they didn't was to cannulate in my arms.
Prescribed 4 days of steroids and have appointment with my onc on Tuesday followed by treatment if she has no major concerns..
My arms are already much better so fingers crossed it was a minor blip.
It's the first time I have had a problem and you don't realise how it can effect you emotionally when you get sent home without your planned treatment. I know there are no guarantees with this and you have ups and downs and it's only happened once. Everyone says don't worry it's only one week make the most of it but I just don't want to give the bloomin thing growing in my body a week off to have a rest and regroup.
Hopefully all will be back on track next week and the come down off the steroids at the weekend won't be to bad.
Thanks for listening.
Take care and much love to you all.
Kellie
X

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Re: June 2018 Chemo Starters

Glad to hear that your first dose of T wasn’t delayed Kip. Hope you sleep better tonight. I’d feel really upset having to hear someone’s experience of secondaries., obviously whilst feeling very sorrry for them. And no one wants to hear negative things about T especially whilst it’s being given! I’ve mainly been on a ward with men when I’ve had my treatment and I haven’t found them that chatty about anything., I’d seen some of a Victoria Derbyshire programme when she was having chemo and was imagining I’d be sitting around in a comfy sitting room type place whilst I chatted with other ladies. It’s nothing like that in my hospital. I just go to a ward which has chairs instead of beds. It’s a sterile and not exactly relaxing environment! Still, the nurses have been lovely and it’s on the 7th floor so I get a great view over the city of I manage to get a window seat.

Take care and I Hope you have minimal side effects on the T if any.

Best Wishes xx
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Re: June 2018 Chemo Starters

Morning Kip,

Glad you're doing OK. I'm chilling as I have a week off this week. Watching a trashy film and eating a tomato sarnie. After waking at 4 fell back to sleep a out 6 and had a nice lie in till nearly 9. That never happens!
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Re: June 2018 Chemo Starters

Morning all, day 2 and after intermittent sleep interspersed with heart burn and hot flushes feeling ok today so far but of course still dosed up to eyeballs with steroids until Friday.  Tongue feels slightly burnt but ok, ate breakfast and can still taste it ... For now.  Hope all well for you guys kip xx

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Re: June 2018 Chemo Starters

Oh JuJu I just missed you then I'm was there at 1.30.  sorry to hear you need blood transfusion I've never had one but funnily enough spoke to a old Fella today which had one and us having one ssturday and said it was fine.  I know what you mean about positive stuff thats me too.

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Re: June 2018 Chemo Starters

Kip, i was out of there by 1pm today as it all went on time today. They let me have chemo even though my hemoglobin is low so booked for a blood transfusion on Saturday. Not had one before so not sure wot to expect, nurse did say i cud react to it but wud do so within 15 mins. Hope i dont. Have felt really tired, breathless and achy so no suprise really. Gonna try working tues-thurs but if it gets too much may work from home instead and have a few naps throughout the day. Probs is i think i need to see people and do normal stuff or i go crazy at home, i live alone so its hard sometimes to stop the negative thoughts come into your head. Work is defo a distraction for me. Shame youve had that lady near you today, i hate hearing the horrid stuff, to be honest i only want positivity in my life at the mo x
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Re: June 2018 Chemo Starters

Yss good to be over half way and was glad I didn't get delayed.  My nurses said the injections can make the pain worse, we can see how I compare!   Do you have anti biotics too?  Only downside to today was being set opposite a lady with secondaries who insisted in telling me her storyTWICE!!  Scared me senseless but just trying to put it out of my mind.  She even. Said T was the worst thjng ever..  really cheery!  That's 2 ladies I've met there who were full of joys!  Perhaps that's what chemo does to you!  Hope you in feel better tomorrow.  Sleep well

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Re: June 2018 Chemo Starters

Just think, we are over half way through the chemo hell..... glad you got it done (sounds just like my experience last week with the bloods coming back low and then having another test etc)
I am okay today but in terrible pain yesterday so stopped the injections, rang the hospital and they told me to take pain killers. But have spoken to my nurses today and they want me to continue the injections starting tonight (so dreading it). Rang into work sick today and just had to write a mail saying I won’t be there till Thursday at the earliest now!!! Injections finish on Wednesday.
I would say it’s great if you don’t have the filgrastum injections, definitely seems to be causing the pain.
Anyway hoping that by the end of this week I will feel normal again?
Hope you get sleep tonight,
Xx
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Re: June 2018 Chemo Starters

Well all done, first T in. The body.  Neuts were back up from 0.6 on Saturday to 6.o today so no injections this round either so hoping that may reduce the bone pain.  Was nicer having just a drip instead of the fec being fed in.  Feeling ok at present npvut have been told it can start after steroids finish.  I have the last big does tomorrow and then back to 4 a day for 3 days to wean down slower...  Then who knows what???  Still have anti biotics too, but higher dose starting Friday so a new regime to get my head round.  How you doing Em?

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Re: June 2018 Chemo Starters

Good luck Kip, hope it goes ahead!! Xx
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Re: June 2018 Chemo Starters

Good luck , let’s hope it can go ahead today for you Kip. X
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Re: June 2018 Chemo Starters

Thanks guys, have to go in early as neuts are low so have another blood test ... Might have taken steroids for nothing... Fingers crossed.

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Re: June 2018 Chemo Starters

Good luck Kip big hugs going with you today. Kxx
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Re: June 2018 Chemo Starters

Kip,

You'll be fine. Good luck and I hope they don't keep you hanging around too long.
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Re: June 2018 Chemo Starters

Hi well it's D Day today first T !  Scared!!  Didn't sleep too badly last night considering 8 steroids in system alreeady and another 4 in this morning.  Off to Tesco for last minute supplies and painting nails ready.  42 days until last blast...  Must focus on that.  Have a good day all, kip xx

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Re: June 2018 Chemo Starters

Hi JuJu glad you are doing ok albeit a bit achy etc and really ploughing through the chemos.  Mine no. 4 of 6 tomorrow so trying to focus on that although dreading the T ones.  Good news about the scans its such a relief isn't it.  I can't wait to be able to no be counting down the days to the next chemo.  I've started steroids today for the chemo tomorrow ... 8 a day for 3 days so expecting lack of sleep tonight.  Shame we'll miss eachother againi think !h next one is earlier on 3 sept so maybe then. kip xx.

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Re: June 2018 Chemo Starters

Hi ya Kip, sorry havent been on here much lately. My chemo is at 10 tomorrow so i shud be finished by the time you get up there unless i get delayed. Doing okish, feeling quite tired and lethargic at mo. Suffering from achy legs too which isnt helping either. Nurse said just take ibruprophen for that. Tomoz will be week 9 of my 12 weekly plaxitaxil/carbo combo. Have to say its gone quite quick so far but still got Fec to look forward to! My ct scan and bone scan came back clear so that was a massive positive last week and burst into tears when Kevin the consultant told me!! Think my emotions/anxiety etc were all over the place coz next day i fainted, albeit for only a few seconds. Luckily was with sis and bruv so they sorted me out. Nurse said my blood pressure got too low coz of heat. Scared me to be honest, but bloods were all fine so was able to have chemo last Monday x
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Re: June 2018 Chemo Starters

We went to a bbq last night. Ended up having a curry! Supposed to be picnicking st a music do this afternoon. I don’t think so! Pub for Sunday lunch sound like a good idea though!! Kx
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Re: June 2018 Chemo Starters

So BBQ was good despite the fact it rained (after all the hot weather the one day you don't want rain) and I stayed out till 1am. I was very good and didn't drink though despite there being massive amounts of woo woo flowing.
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Re: June 2018 Chemo Starters

Hi JuJu, how's things, haven't heard from you lately?  I'm up for chemo Monday 3pm , you there?

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Re: June 2018 Chemo Starters

Excellent Sally. Enjoy the bbq