May 2017 chemo starters

[WolfEE]

Treehouse, the lady in the salon didn't ask me what length she just did it and it's practically bold apart from some stubble. And the stubble is great gives me a kind of darker look on the top rather than just pale never seen the sun white head. I was so anxious and the hair thing was horrendous but I'm so ok with it being purely bold. It feels so comfortable no tenderness when I touch.
I have absolutely no regrets.
My wig tidsy has given me a headache and the elastic bit added pressure on my glasses and that made the headache worse but I guess wearing it a little each day I'll become more used to it.
When I got home the hair come off before my shoes or jacket.
Xx

[treehouse]

Thanks Mai. Will give it a go tonight. Mum did not upset me in the slightest and my dad just made me laugh. My hair is really not important to me. But then I don't have to look at me.

[Mai7]

Treehouse, I went grade 2 and found it easy to manage as you don't have bits poking out! Did your family upset you or was you ok? After I shaved my head I sent Mum a black and white photo of me so she could react away from me and she's only seen me in the wig since!  I told my mum right from the start that she is banned from crying in front of me. She has to be my strength and has to go elsewhere to weep! It may seem harsh but it works as she always seeks strength from others and comes to me strong (a bit anxious sometimes). I can't cope with weepers, I just wouldn't know what to say and it would feel like it's my fault. But that's my way of coping....... Xx

[AnnieA]

MJK haha no it definitely wasn't George Clooney. However she was lovely and very reassuring. I'm in a little bit of discomfort now but with the amount of tugging she had to do I'm not surprised. The dressing on the exit site is a little bloody do we think this is normal. The chemo nurse didn't seem alarmed when I mentioned it on the phone. I just thought there was a stitch there so cant understand why it may have bled.
X

[treehouse]

Advice please ladies. I went grade 4 all over when I shaved on Sunday however it is very patchy and some of the thicker parts poke through my scarfs. Has anyone gone completely skinhead? Or would a grade 2 help. I have much less sensitivity so think I could brave again. My mum got upset as I expected and dad in his usual pc manner said I looked like I belong in a concentration camp. I wont lie I don't look pretty. My youngest says I look like the ladies out of Raul Dahl The Witches movie. ( everyone's a critic I love the honesty from my family)

[MJK]

Ian Toothill we salute you. ↗🗻↘ Thanks for the inspiration to keep climbing the mountain (although I think I'll give Everest a miss).

[MJK]

AnnieA I'm guessing George Clooney didn't fit your Hickman line as he was a bit busy today. Congratulations to the Clooney 4. 👫👫

[MJK]

Mai, I think the diploma has actually become more important to me. Firstly because I've put so much work into it that I'm not prepared for the cancer to rob me of it. Secondly because it will allow me to do private tutoring as much or little as health allows.

[Mai7]

MJK, I think we are all kittens looking in the mirror and trying to connect with our inner lion! Has your attitude changed at all towards your diploma since your diagnosis. Has it increased or decreased in importance for you?

Well done Annie on having Pic line success. 🏆

[maggie aitken]

my daughter has lupus so we are quite sun aware, but it appears that anything above a factor 30 actually blocks the healy effect you get from sunlight too... you live and learn!

[maggie aitken]

there is the option of a collection of fabulous hats, from the internet and quite cheap, two arrived today - a velvet paddington cloche and a lovely grey with crochet flowers.  Also have indoor hats and caps and scarves. Not usually one of make light of difficulties, as a right old grouch recently, sometimes we need to be the best of what we are at any given time. For me, that's the hat!

[maggie aitken]

i found a swelled up quite badly, a shame because i love the sun and the garden...

[maggie aitken]

late reply and hope you are much better now, but .. I made up a mouthwash gargle of bicarb and lemon juice, as it has some anti bacterial .properties, and I have also been using it is an air freshener - just a tiny amount of bicarb (as it will show is wee white things around the room) distilled water from the kettle, proprietory lemon juice. Or fresh if you are either organised or posh, nt like me!   Threantened mouth and throat issues have not deveoped, though I bet they do now, but hope this helps .. poor you

[MJK]

For headscarves it depends what look you're going for. I know there are quite a few makes out there so it's worth a look on somewhere like Amazon or Amoena. As was a bit of a watersports / hiking kind of girl I'm using my Buff headwear which feels more 'me' and are very easy to put on. X

[treehouse]

Hi daffodil. My hospital gave me a voucher and recommend 3 places nearby. Talk to your chemo nurse. Go try some on. I love my short cut.

[Daffodil54]

Where did you get a decent wig from? Am looking to get a funky short one after I cut my hair short. Also any chemo scarf advice. 

[MJK]

Well done Annie . Glad it wasn't too bad. Try to get them to give you a time for when they come and flush it so you're not sitting around waiting (like I am at the moment)😴. This is why I do my own injections... Still, I have coursework for my diploma to do. I love the lion picture Mai.

[Mai7]

Treehouse, I think you've already got them all lol, you're the ultimate carpetbagger of the goody bag! I'm going to ask for some Difflam in case I get ulcers again and some Movicol, I'll also ask for Omeprozole to be added at some point but have some left for now from an old GP prescription. I think we've all exchanged notes enough to go and give Onc's pressure for the best of everything! Good luck with your Mum's inspection and rocking the chemo scarf!

[treehouse]

Well done Annie. 🎈 brave award for you too. X

[AnnieA]

Hi everyone I'm just back from having my Hickman line in. Obviously it wasn't nice but it wasn't as bad as I let myself believe and I actually feel quite proud of myself. Now comes the worry of looking after it I guess. I'm already questioning why the dressing is so bloody 😏 Xx

[treehouse]

That sounds really interesting busybee. I would use something like that if my phone would work. Mai what goodies are you requesting? Always nice to know what is on the menu at other hospitals.
Ashley is staying in the box today. Some days you want to be normal but can't be bothered today. I am staying in and going braless and wearing a bold pattern scarf. Today I rock chemo patient. My mum is popping over later and I know the first thing she will go is ask me to take my scarf off.

[Mai7]

Thanks BusybeeS, I've made a note of the website and will mention it to Onc tomorrow. Im going to try and get a couple of upgrades on my goody bag too! 

[Mai7]

Aw, thanks MJK, I feel very special now with my bravery award. Here's one for you also 🦁, hey, just hope I don't turn into the lion in the wizard of Oz! Here's a pic of a card from my Mum which we all deserve to share:

[busybeeS]

Mai7, the website is vitrucare.com but I think you have to be set up by the healthcare team to get access to the app.
Glad most of us have now had the shave. It makes life easier to not see the hair falling out in clumps. I didn't like the idea of a wig and I only wear a hat if my head feels cold.
Only 1 week to go to my 3rd treatment - Time seems to be flying by!

[treehouse]

Hi Rosie. Great news about your lump reduction Tha must put a big smile on your face and help you keep going. I have a carboplatin chaser at the end of my treatment day cocktail. (it was the only chemo my mum got for ovarian). This one is my quickest bag. Only takes 30 min but is fresh out the fridge so is bloody cold.i wrap my cardi round my arm and sit in the sunny chair 🍸 ☺

[treehouse]

Morning all. Lots of brave ladies today. Well done guys, I love hearing you cope helps pick me up when I wilt. . If my chemo brain is correct good luck Annie with the line. I think its this week?😣
This is my germ avoiding week so staying put today. I have got some cravings and long to mooch in Waitrose ( we never shop there - but husbands at work and if I eat it all he will never know 😉)
I am round 2 day 8. SEs are arriving but about 4 days later and much less severe. Mouth is rough today. Will try mouthwash as I now have 2. I had a bit of a meltdown with my injection last night . Only one more this round. I can do it !!

[WolfEE]

Trish, I've got big bro recorded I'll watch them going in when I get home this afternoon. I also need to watch a few back episodes of game of thrones at some point ready for new season - can't wait

[WolfEE]

Love the brave sticker 🦁 This is me today I'm going out popping in2 work and I can't stop thinking about germs 😷 And it's my first time out with the wig!!! I'm up, showered (and yes it was wonderful not having to dry my hair) because of this I'm now ready to go but it's to early so sitting nervous watching the clock! Wig already feels heavy! Wonder what they are like in the rain?
Have a good day eveyone xxxx

[MJK]

Glad you've got supportive friends. I've got the PICC line flush this morning too. The Limbo shower cover has been great. Mai7 here's an I've been brave sticker for you. 🦁

[Trisha69]

Been awake since 2 am watched BGT on catch up,was fun to watch 🙂  Quite a lot of hair appears to be shedding, hey ho is inevitable. Feel pre menstural, tearful and moody.  Nurse at 9 to clean/flush picc line.  A friend coming over service my bike and cook me dinner and give my wonderful friend Jilly a break xx

[Mai7]

WolfEE, well done on braving the shave. You'll find having a shower so much quicker now and wig-hair just has to be put on and looks like you just walked out of the salon! Will we ever want to go back to our own real hair and all associated mantenance!?

busybees, do you have the name of the web app? If so, I'll look it up. I've been keeping a huge spreadsheet so far.

Rosie, on my last chemo I asked the nurses whether I'd get an "I've been brave" sticker!?

[busybeeS]

I definitely have goodie bag envy. I think the hospital have the minimalist approach. I only got the anti sickness steroids on my last visit as I had tablets left over from the previous treatment. Shouldn't complain as I obv don't need too much. Fingers crossed it stays that way.

[Rosie65]

Thank you ladies for your good wishes. I am celebrating by sitting here in my newly acquired colourful turban. 

Like you WolfEE I finally braved the shave, you articulated exactly how I felt about my hair.  Now I  just feel complete relief.

The wig (as yet unnamed) has been cut and shaped today to suit my face and I'm really pleased with it. Bought some scarves/hats too.

Katie - I'm also a bit daunted by weekly. I'm currently working from home but may have to forget that in July/Aug. I must have looked a bit crestfallen when she told me as she said "don't worry you will get through this"

Onc upgraded my goody bag by adding Buscopan and Difflam mouthwash. Wonder if we'll get a balloon and a slice of cake with our last treatment?

[busybeeS]

Mal, it's a generic tool I think, but it has been customised by the hospital as there are videos on there with the onc and a nurse I recognise. It's only recently been taken up by the hospital I'm at. You have to be prepared to fill it in every day to generate the overall picture for the regime.

[katie11]

WolfEE well done. It is a sense of relief. You do dread it more than anything and the realisation is relief and kinda dont care!

So pleased for you rosie65. Must be a relief. Yes I'm triple negative too. Glad someone else is on same as me. Was feeling a little daunted at weekly! My oncologist also said I would have other is genetic testing is back and positive but don't think it will be back in time.

Busy bees that app sounds good. I haven't heard of it before x

[misyangel]

Wolfee well done, so pleased for you,  I had such a sense of relief when I did mine as I felt it was always there and becoming obessed with hair coming out every day.  This way all the stress has now gone for you.  I find I wear mainly scarfs and feel really comfortable in them and you can get really pretty ones to.

[WolfEE]

Mai7, I did it. I wasn't going to do it today I spent all night awake worrying over it and then thought what's the rush I can do it next week or at any point. This morning I was trying to make myself presentable for my outing and my hair was frizzy and coming out and I felt awful.
When I got there the lady said no pressure I can go back anytime for the shave (that filled me with dread as you know my 1st experience in the salon didn't go very well) anyway I tried on my wig and she trimmed the fringe etc and I told her my head was a bit sore and the wig was putting pressure she said that once my hair was out that would ease off and then it will feel more comfortable and then she told me how a lot of people shave before necessary because it feels more comfortable the kind of pressure feeling when you touch your hair goes. I pulled off the wig and strands of his come with it and into my coffee and it suddenly dawned on me this is going to get worse and messy over the next week or so and did what an extra few weeks of hair falling out, being paranoid of washing and unable to style etc so I asked her do you still have time to do it.
She said yes - clippers - buzz - 3 mins later I'm looking in the mirror at my bold head and amazingly instead of feeling upset all I felt was relief.
The hair thing had been playing on me so much and I think now it's gone my anxiety went with it. I'm happy I did it. Maybe later as reality kicks in and I have to rely on the wig and scarfs I'll have a wave of panic I haven't been out yet but so far so good no regrets and the scalp feels free and the tenderness has improved
I've done it it's another step ticked and completed
Xxxx

[Mai7]

Rosie, and I'm sipping a celebratory peppermint tea in honour of your shrinkage! Size matters! Best of luck with your new treatments. 

BusyBees, your online SE monitoring is a great idea. Is it a generic web tool or unique to your Hospital? 

[WolfEE]

Rosie65 - half the size that's wonderful I'm so happy for you it makes all this more bearable knowing it works - good news I'm celebrating for you I'm unwrapping a Lindt chocolate ball and enjoying it as my toast for you xxxx

[Rosie65]

Ha ha love the Chemojies!!

Katie - just back from onc appt and with confirmation of BRCA1 my treatment plan has changed. I'm starting weekly paclitaxel x 9 on 6 July so we can compare notes with the addition of carboplatin once every 3 weeks which is supposed to be really good for tumours caused by BRCA1.  She said " let's just throw the kitchen sink at it"  lol

Are you trip neg too like myself and Heather?

Shows the importance of chasing up the genetics testing I didn't think it would make any difference.

EC seems to be doing its job anyway - lump is now half orig size, according to the handy measuring tool they use and the onc has requested another ultrasound to check this (a bit more scientifically!).

Two more EC to go - this Thurs and 22nd June

[busybeeS]

Hi Everyone. I haven't posted in a while but I am reading posts and keeping up with everyone's progress. Glad to see that we are all managing or having minimal side effects. I have been asked by the onc to complete a daily web based app that keeps track of your SEs and if anything is out of the norm it gets flagged to the chemo Help line and you get a phone call within the hour. Is anyone else using this? I think it's a great service and provides reassurance that your not o your own.
With all the talk on hair loss and wigs - made me think I'm on FEC the whole time, so I might start growing my hair back in time for Christmas!

[treehouse]

Hi Mai. Yes I have been taking omeprozole before breakfast. This is the first time I have had heartburn. Last time I just couldn't stop farting. Why do the side effects change?

[Mai7]

WolfEE, glad you got the tribble, ready for your life to be filled with Trials and Tribbleulations!  Did the hair shave take place or are you still hanging on to it for now?

[Mai7]

Treehouse, have you been taking your Omeprozole or are you still getting heartburn with it? I think I've worked out that I only get the bad heartburn around days 7-13, same time as sore mouth, which correlates with low immune period.

[WolfEE]

Just been and picked up my trible 😮 It's hanging on the banister post perfect like my stairs were built with that job in mind. I'll leave it there and keep peeping at it for a while maybe if it stays there it will start feeling like part of the furniture !!! (It's actually not so bad I'm warming to it)
Xxxx

[treehouse]

I have felt much better on my second round (of lots of drugs). But the pains started again today. (day 7) paracetamol seems to be working and i am keeping moving rather than staying in bed. I think lying on a sore back made it worse first time. A bit of burpy heart burn this time but nothing to complain about.

[Mai7]

Raitchr, sorry to scare you with talk of T!  I've worked as a forecaster so can't resist a bit of trajectory and extrapolation. Although predicting T effects will probably require a crystal ball! Glad you have your side effects well managed now.

Katie, if your med ends with Taxol then it's in the same drug group as Docetaxel so we can talk over T.

[katie11]

I start paciltaxol on the 5th July but a weekly dose x9. Is anyone else on this? ?? X bit nervous starting new drug. Still have got last EC on the 14th to think about first! X

[MJK]

Good to hear you're doing ok. Having the boys off school for a week is probably tiring in itself. It does mean docetaxol over the summer holidays. 😫 If things stay on track I start T on 27 July. I'm banking the childminder sessions I'm not using to give me a break over the summer. X

[Raitchr]

Think I maybe the T guineapig, got last FEC 22 June, not even thinking about the T yet! Day 5 today and better than 1st cycle. Just tired but making the most of boys being back at school. Mouth is ok but a little sensitive, no constipation this time! 

Heather