May 2017 chemo starters

[Jay68]

I almost forgot my second lot of steroids on the day of chemo - so excited about it all going so quick and smooth whilst enjoying my lunch and then suddenly remembered! Hope you manage some sleep!

[Trisha69]

Hi Tree house ok. Got home 6pm last night from hospital. Took my push bike out this morn. Slept this afternoon. Still got diaorresh nut feel ok. How's You?x

[Mai7]

That's great news Jay, how many treatments have you had? My scan was after 5 treatments and similar feedback. Results will go to surgeon for info but there didn't seem to be any immediate plans to discuss surgery. I guess it's just a matter of waiting for an appointment letter at some point.

Treehouse, looks like you could be in for a late film and munchies! 👀 🍟

[Rosie65]

Thanks everyone for scalp advice, I've been using Palmers shampoo that I got before chemo in the vain hope I would keep some hair - it's a large bottle and there is still plenty left!. I clearly need something extra, I'll check out the Jennifer Young products.

Happy to do a blood dance for you Mai, it doesn't look like like I'll be walking anywhere, the rain here is far from intermittent. It does seem that our bodies are really starting to struggle with the cumulative effect of chemo.

katie - oh that's good news, yes I had carboplatin added to my treatment - so it's a 3 weekly cycle carbo and paclitaxel for the first week and then just paclitaxel for two weeks, 4 cycles in all.

Jay68 - that's  really good news, makes all the side effects worth it.

[Jay68]

Thank you Treehouse - yes will definitely bewaiting til 6 months at least after chemo before hygienist and eye sight test! so after this next one you've got just one more to go.... - that's where I am - just one more to go but seems an eternity away!

[Mai7]

Yes, I loved watching Wacky Races as a kid. (Lol, duckety duck!) Now I'm on chemo vacation I'm probably more like toad of Toad Hall "on the open road" 🐸 (sorry to give you yet another annoying song!). I still, optimistically, had my steroids this morning ready for tomorrow so will enjoy a brief buzz from them!  I've asked my sister to bake me a celebratory cake whilst I still have tastebuds this week. Will look for the silver linings. I avoided triggering an emotional response to the delay as I'm hormone receptor positive and don't want to stir them up! 🤖 🐲

[treehouse]

Not corny!
FORGOTTEN

[treehouse]

Aaaagh!! I am so out of routine now I completely Corby you second lot of steroids!!!!!!
Just taken them with a biscuit.
NO SLEEP For ME TONIGHT 😮😮😮😮😮😮

[treehouse]

That's good news Jay. Good luck tomorrow.
I have 2 to go. So close but yet .....

Wait til after Chemo for hygienist, my experience has been rather bloody at the hands of butchers who seem to enjoy their job too much 😬. Definitely high infection risk 😷

[Jay68]

Returned from ultrasound scan - the lady today wasn't giving too much away!  She said the lump in my breast was smaller and she couldn't find the lymph gland which had showed cancer at all.  She smiled at the end and said "excellent" - I enquired does that mean it's all working - she replied "yes it's certainly doing it's job - and your surgeon will have the report on the system tomorrow when you see him" - now just got to wait until tomorrow afternoon to see the breast surgeon!  Whilst at the hospital popped into Olive Tree and got a shorter length wig - just fancied a change!  

Mai, I'm sorry to hear your neutropils are down and treatment is being delayed - but worth waiting.  

Good luck with your bloods today Treehouse - my fingers are crossed you can go ahead with next lot of chemo this week - how many more have you got to go?

Rosie65 - I'm also going to book a hygenist appointment - my teeth and mouth definately deserve a treat!

Raitchr - how is your mouth?  My tongue is really sore - I can't work out why it's so bad - I've been using all my usual mouthwashes etc but it seems much worse this time round it's that or I'm becoming impatient to eat some "normal" food!!!

[busybeeS]

Hi Rosie. I used to use head and shoulders when I had hair. Tried to change to a mild baby shampoo during chemo but head kept on breaking out in spots, so I just continued to use H&S as it seems to help to prevent outbursts and stops the flakiness as well.

I've had a sore arm since last chemo, seen onc today for a scheduled review and been prescried hirudoid cream to massage in twice daily to alleviate pain from damaged veins. Thought I was going to get away with minimal SEs. Hopefully this one is temporary as I asked Dr if the next chemo should be done in other arm and he said No, they'll just use whatever arm they can get cannula in. Has anyone else experienced this?

Sorry to hear that folks are getting treatments delayed but I think our bodies are letting us know when they want a little rest from it all!!

As for ultrasound, I was told when I went in for very 1st scans when I found lump that if it's a dark area on the scan it's usually liquid and therefore a cyst. The radiographer told me it was cancer before I had the biopsy - she could tell just from the mammogram and ultrasound alone.

Good luck to everyone on treatment this week. Xx

[katie11]

Well done anniea. We are getting there.

Blood dance for you too Mai. Love wacky races! Feel like this chemo game keeps handing out more obstacles as we near the finish line but we all will get there one way or another.

I got my results back rosie it was negative for genetic test. Have you had any drugs added to your weeklys because of it?

[AnnieA]

Hi ladies , chemo number 5 done and dusted, second T. Only one more to go. Hoping to manage side effects better this time around. Still surgery and radiotherapy to go for me but I can see a light at the end of the tunnel now x

[treehouse]

How you doing Trish?

[Trisha69]

I use menthol aqueous cream. Oncologist prescribed it for my scalp

[treehouse]

Rosie & heather Because I had acne on my scalp I have been using simple face wash or dove baby bath. Anything gentle .

[Raitchr]

Loving the wacky races, reminds me of being little!

I have used Head and Shoulders menthol shampoo everyday on my head to prevent it being dry and itchy. I have oily skin so I don't usually use any other lotions and potions!

Goings school shoe shopping, oh the joys! Its out and about and dry and I can feel normal!

H

[treehouse]

Love the wacky races!!!!
Duck duckety duck ( replaced d for f)
We are all getting tired of this game now. Have a holiday and come back fighting 💪🏻

[treehouse]

Oh Mai I am sorry but if it helps I really do think the delay has helped my overall health. And I have enjoyed the holiday with my kids. As you have been in hospital maybe this is for the best. Well done for remaining calm. I had a melt down for an hour when I was told. X x x sending hugs and positive vibes x

[Mai7]

Lol, I was just thinking as we get closer to the finish line it's starting to feel like Wacky races! 

[Mai7]

Well ladies, I just got back from my Oncology appointment and I have a one week delay as my neutrophils were only 0.96 so too low for chemo!  I shall now perform the "we're-all-getting-tired-of-all-of-this-crap" dance in a calm and peaceful, somewhat meditative fashion.  👯 💃🏻

Treehouse, I sincerely hope your blood is good to go this time. 

Rosie, same as Treehouse, I use a Jennifer Young scalp product on my scalp. The website is www.beautydespitecancer.co.uk. I use the cleanse and moisturise balm and it has kept my scalp in good condition.

katie, well done today and hope your side effects are bearable.

The weather is overcast and windy here with intermittent rain.

[treehouse]

Hi Rosie what are you washing your head/hair with?
I was given Jennifer Young Defiant beauty itchy skin oil which is made for Chemo scalp. Have used it on my legs but not needed it on my head yet. It is lovely. Glad you are seeing regrow this 😊

[Rosie65]

Well done Katie, another one ticked off. Was it you that was having genetic testing, wondered if you'd had your results yet?

I have a very itchy, flaky scalp, any recommendations as to what to rub on it? Also want to encourage the new growth which is now appearing!

Raining here too Heather, I try to get out for a walk every day, but don't fancy it at the moment.

[Raitchr]

Doing the blood dance 💃 and the sunshine dance 💃sick of rain ☔ I have cabin fever, haven't left the house since last Thursday and that just to go to chemo.....

Heather

[treehouse]

Thanks Katie. Well done, keep strong you're getting there.
Feeling a bit wobbly today. 😕
X

[katie11]

Blood dance for treehouse! Hope all well this time.

Just back fromantic. No.6 weekly so lunch and nap this afternoon .3 to go!!!!!!

Good luck everyone else x

[misyangel]

Thanks Roie65 thats good to know.

[treehouse]

Oh good grief no wonder you have little confidence in your team. My surgeon who did the onriginal ultrasound was being cagey so my husband asked her out right ' do you think it is cancer' she was trying to be positive but when asked a direct question she had to answer 'yes'. That really helped us come to terms with thing before the biopsy results. I would not have had the guts to ask directly. Husband did!

I have just had blood test with nurse at GP. Now doing my own little dance 💃 to get good result.
I also asked her to check my toe while I was there. She was happy it was not ingrown and suggested I get the nail file out and wear sock inside out.

Good luck with appointments today ( Mai . Jay? Anyone else?)

[misyangel]

treehouse mine meet on a Monday. just feel frustrated as the oncologist understudy said specically if you haven't had appointment by Tuesday the chase.  I explained to her that my auntie had come to this hospital a couple of years ago and was told she had very treatable bc and she died which is why my mum in particular if very anxious that everything is done properly, my auntie didn't do herself any favours as she didn't look after herself properly whilst going through treatment she was contantly looking after her daugter's baby and not resting and we didn't realise how careful you have to be ie not getting infections and going out when you are at risk and she went abroad when she shouldn't have.

I am even more annoyed as I saw the professor last time and he examined this lump and told me to bring it up at my next visit and he hadn't even updated the system as the person who examined was trying to check what he had written last time and there was nothing on the system.   I think they knew mine was cancer after my first ultrasound but the women wasn't giving anything away and she put a marker on the lump and said she had put this on in case I move to australisa and ended up having a mammogram they would know a biopy was taken but when I have looked on other forums they put the marker in when they suspect cancer and also after my meeting with the nurse after biopsy she kept saying there was something spicilated on the ultrasound which again when I googled spiculated it meant cancer but I didn't know this at the time.  Hopefully they will know straight away from ultrasound just feel stuck in limbo until this is done.  I will chase again by 11:00am and leave another message on secretary answer machine

[treehouse]

Misyangel do you know which day your MDT meet? Mine meet on Friday morning and discuss all scans etc and More than once have phoned me in the afternoon. Having said that they were able to tell me after ultrasound that the original lump looked like it probably was cancer. Although biopsy confirmed that. I know you are worried, frustrated and p***ed off.
Sorry we can't help. But we do understand.

I have blood tests tomorrow. God knows what happens if this comes back low again 😬. I feel fine. But then I said that last time!

[Rosie65]

Hi ladies thanks for all your support yesterday, am making the most of today and tomorrow as they are the better days of my week.

Misyangel - you must be so fed up, we really shouldn't have to chase all the time to get these appointments,it's all stressful enough without that. I also found that the dr at the ultrasound was happy to discuss results recently with me at the time and just said she would pass a report on to oncologist.

I've also had watery eyes but have found it's made removing contact lenses easier. I am already menopausal and my eyes were really dry before chemo so this has been an improvement!

Will definitely book an eye test after chemo - and a dental appointment as I'm sure all this mouth wash can't be doing my teeth any good.

[Helenk]

Hi I think we be heading to surgery at same time, last fec-t in September then surgery.

[misyangel]

Thanks mai 7, Wolfee, Katie11, jay68
Jay68 that's reassuring about instant results from ultrasound was worried as when I first had diagnosis had to have biopsy and wait week and half for results which seems like forever when waiting. I have left message on oncologist secretary answer machine explaining situation so hoping I get a call tomorrow.

[Trisha69]

Hi Mai7. Unfortunately no. Have a friend who has turned out to be useless and an ass of an ex who just winds me up. Family all miles away. My BC nurse has passed my details to thelocal Hospice charity to offer me support at home. Company and practical support with transport to appointments. The ads has picked me up and said the F word about 10 times already because of howlong it took to get to the hospital. It's a City! Exeter and holiday makers and an accident
Grrr can't see this eve being a happy one x

[Jay68]

Thanks WolfEE for this - my eye sight is constantly changing whilst on chemo - and I've promised myself a sight test after treatment - I'll now add on 3 months for them to settle!

[Jay68]

Hi misyangel - sorry to hear of your situation.  The ultrasound scan shows results instantly and the person carrying out the scan - if anything like where I go, are part of the breast cancer team and are able to clarify what is happening - obviously the onc is the person who confirms and discusses the way forward with you.  My breast was showing a new suspect area when I had my last scan but I was reassured this was probably nothing to worry about - I was also informed that they really don't like to carry out biopsies once you're having chemo because of the infection risk.   Hope you get a scan date very soon and your chemo isn't held up 

[katie11]

Oh misy, I'd be fuming too. Surely they can realise how anxious you must be. Don't worry re chemo we will all stay here with you.

Nice to hear from you annie and now a community champion, well done. I'm booked onto moving on course in September although won't have finished radio by then. It seems quite in depth it's 6 hours over two Friday mornings so looking forward to seeing what it is.

Everyone else ok x

[Mai7]

Anniej, good to hear from you. I think we'll all be looking over our shoulders for some time. I'm sure you never feel quite out of the woods or are afraid to feel carefree in case you need to be prepared for bad news again.  I guess the moving forward course addresses all of this and we should all try and book onto one when we're off treatment. Are you still having rads or are you all done now? Xx

[WolfEE]

Misyangel, I totally know where your coming from gosh if I went in2 details of what happened with me and the booking of my lympth node biopsy back at the beginning I fear my blood pressure would rise and never come back down. Basically the secretary who books surgery had gone on holiday and not sorted my a lot but i had spent over a week calling the BC care nurse who obviously had done nothing but kept giving me in her sickly sweet caring voice the generic responses they have been trained 2 say all about how it feels long 2 u but it's not. Everyone feels like thins etc etc.
On a plus side when I needed an ultra sound doing becaue of my new lump a doctor looked at the results minutes later and I had some kind of indication there and then at the same appointment. As far as I know MRI and CT scans have 2 be looked at by two specialists but the ultra sounds only one doctor. Without sounding like the care nurse!!!! I think even if you have the ultra sound the day before this will give them time 2 make decision. But also leaves you in limbo wondering about results and what will be happening and that really is the bad bit. They say they understand the waiting but actually they don't and until they are in a similar situation they never will.
Try and stay focused and try not to worry, they will get the best option sorted for you but not without pain and worry on your side. Stay strong xxxxxx

[Mai7]

MisyAngel, understandable that you feel so annoyed and frustrated. I would feel exactly the same and yes, how would they feel if it were their own family. Have you tried calling McMillan to see if they can investigate the situation for you and put pressure on relevant parties? May be worth a try.  We'll still be here for you on this thread to make sure everyone is supported right to the end of all treatment.  Xx

Trisha, do you have a good friend close to home who can stay with you? It would be nice for you to have someone around to support you. Xx

[misyangel]

Warning venting ahead.  Been waiting for ultrasound due to finding new lump, oncologist told me to phone by Tuesday if not had appointment, phoned bc nurse she said that if not heard by thursday to chase. I explained that i had oncology appointment friday to discuss results from ultrasound and possible biopsy and she just didn't seem bothered.Really annoyed as should be having chemo monday providng new lump is cyst but if not had utrasound means it won't get ahead.  I sometimes wonder how these people would feel if it  was there daughter going through this and if they would be so blase.  It already means that by being delayed a week I now don't finish till 17th October and if it doesn't go ahead next week due to not having ultrasound it will be delayed even more.  Feeling really annoyed

[Anniej]

Katie, I agree with you re 'normal' life returning. No hospital appointments, consultants, temperature taking - it is quite daunting. My local Maggie's centre has signed me up for a course in January called 'Moving Forward'. It's about that - life after the cancer journey. I'm going to see if I can have it moved forward as I had my chemo cut short so am finishing treatment earlier than envisaged. Lucky me, but Im worried I will be looking over my shoulder  wondering if the bu****ing C is tracking me! 😟

Sending hugs to all you fighters out there. X

[Trisha69]

The Ex who tho one he is current.... will be there but would rather be on my own or just stay here in hospital but ward full up now and stomach seems better and antibiotics one day left. Feel daunted at going home 😞

[Raitchr]

Morning! Its raining here in Lincs, will rain until tomorrow lunch without a break! I managed to get 30 mins in the sunshine yesterday. I looked a sight, sat in my garden chair with sun hat, sun glasses and wooly gloves on my hands, to protect my nails!! Oh how my family laughed but I needed vitamin d and to feel the sun on my face.

Fingers are feeling much better on this T cycle thanks to Epsom salts which I have used regularly. Toes feel a bit like pins and needles but only slightly if I have been sat and not all the time. Happy that it is much better this time.

Think it is going to be a movie and board game marathon day today! 

Heather

[misyangel]

Mai my last chemo won't be until the 17th October so think I may the last one on this group, seems a long time away when I had my first chemo on 12th May

Wolfee my left eye is sore, I was given eye drops on my last chemo and will continue to ask for them.   I do think it is another side effect lol .  Wolfee I definatly think we should check in every May for each anniversary.  Can't wait till we get to the end.

Heather sounds like a plan that we are all here till the end.

Trish really hope you get to go home today but hope you have someone there for you at home 🙂

[Mai7]

Morning ladies!

RE. Eyes, I use a product which I bought from the opticians called "viscotears liquid gel". I drop it it my eyes at bedtime to stop them drying out overnight. I also have some Golden eye drops in case of soreness/irritation.

Rosie, sorry to hear you're not getting any proper good days. Even though I've been hospitalised twice I still get quite a few good days but continuous bad days must be tough on the spirit for you. Just hang in there and keep pushing forward. There is a light at the end of the tunnel. Xx

[katie11]

Nice idea wolfee. Will be nice to see how we are all doing in a year! Know this sounds strange but am actually feeling daunted at the thought of finishing treatment and getting back to some sort of normal! Even leaving the chemo nurses and you guys will feel very odd! You have been part of a very surreal journey that will seem odd on the other side.

Hang in there rosie. These weekly ones do catch up with you. You always feel like you are at the hospital without a break x

I had problems with my eyes in that they constantly run. Anyone else?

Good luck today / this week those on treatment x

[Trisha69]

My last one the 8th Sept x

[Trisha69]

Enjoy 'normal! Sun trying to cone out in Devon ! Having my bloods done and no diarroeah thru the night so maybe home today x

[MJK]

Hi everyone. My last chemo is on 7th September followed by radiotherapy. My eyes haven't been great (sore and not focussing) either, I haven't been able to wear my contacts. I'm in Devon for the week at my mum's house and I'm feeling quite 'normal'.