May 2017 chemo starters

[Jay68]

Good evening ladies and I'd just like to say a great big thank you for all your good wishes and thoughts.

How am I feeling?? - nervous and excited along with many other emotions!!  - In all honesty, I can't wait for it to be behind me and I can move on to whatever is next in this horrid journey!  

For those who have had the op - do you have to remove all jewellery (ie wedding ring/eternity and engagement rings) in particular and what about earings?  I'd rather not wear any than have to remove and put in a hospital safe.  Any information greatly appreciated.

[Jay68]

Good luck Wolfee with your pre-op you'll be just fine x I will be thinking of you - what time is it? x

[Jay68]

Hi Heather - this is interesting news about your swollen feet and ankles. My foot (with broken toe) has been swelling up to and including ankle - been putting it down to the toe but now you have me wondering?! I elevate mine and it does goes down. Overnight it goes down completely Oh this is a big minefield!

Delighted to hear your flight is safe - after waiting for this for so long I'm pleased you can still go!! x

[Raitchr]

I didn't cold cap at all, lost hair on 1st of 3x Fec but after 1st T any remaining hair (I had .5 buzz cut) fell out as new hair started to grow.

Always welcome to ask questions, think we can answer most things now between us.

Heather

[Jay68]

Hi Treehouse - no you don't get given any anti sickness drugs. Although I can't say I've felt sick, I did feel a little that way after dinner tonight but I'm putting that down to pre-op nerves....!!! eeeksss......

Other Herceptin side effects - dull aches in top of thighs, runny nose and sneezes, a little dry cough - none of it is horrendous and comes and goes. Also, not sure if some of it could be after effects of chemo!

[Jay68]

Hello Soworrid - I never used the cold cap, however, I do understand the FEC or EC is harsher on the hair follicles than the docetaxol - especially head hair.  From personal experience the docetaxol does seem to affect the nose hairs, eyebrows and eyelashes but it seems to differ from one person to another.  

[Soworridl]

Me again may gang 🙂 as you've all experienced this all for longer. Have any of you had any success with the cold cap? If so is the dosataxol harsher on the hair? I run my hands through my hair and some strands come away. However slowed down since days after treatments. Is this normal with cold cap. Or do I give up. Very very thin on top 😞 hope you don't mind me popping in on here again xxx

[Raitchr]

Ok panic over, our flights are not on the Ryanair cancellation list!!

Have got swollen feet/ankles again, have had this for a few nights now. Any remedies??

Heather

[Mai7]

Hope your pre op appt goes well tomorrow WolfEE. Xxx

[treehouse]

Back to walking again after round 6.
20 brisk mins. Yay. Little achievements but I will take them.

[MJK]

WolfEE, all the best for the pre-ops tomorrow. I hope all goes well.
Jay, all the best with tomorrow's surgery. My overwhelming feeling after my mastectomy was of relief that the nasty lump was gone. Big hugs x

[tatyana]

Best wishes for tomorrow Jay and wolfee!

[treehouse]

Good luck wolfee. I got my pre op appointment through but it clashed with my first herceptin injection. Have managed to reschedule. It's next fri

[WolfEE]

My pre-op tomorrow 😬

[katie11]

Good luck Jay xx

[WolfEE]

Jay, hope your feeling ok about tomorrow. I'll be thinking of you all day getting rid of this horrible thing. Update us when your feeling up2 it - good luck xxxxxx

[treehouse]

Ooh Jay is that tomorrow? Wow. Sending hugs and thinking of you. Let us know how you get on when you are able.
I can't imagine how you must be feeling right now.
X x 😘🤗🤞

[Mai7]

How annoying MJK. I took my full sharps bin into the chemo unit last time and they happily took it off me. The nurse forgot to give me a new one so I had to get an emergency delivery for it but this one isn't as good. It has a guard on where you post them in (presumably kid proof) but my finger gets stuck in it when I post the injection in and it's quite painful! 

Treehouse, I don't know anything about chemo, cancer and essential oils other than cancer doesn't like Frankinsense, I think it kills it in vitro tests.

Rosie, big hugs and not long to go now for you. The tiredness has been getting to me day 4 and 5 so hoping for a bit more energy tomorrow.  

Jay, wishing the very best for your surgery tomorrow.  I'll be thinking of you. Xxx

anyone else in surgery this week?

[treehouse]

That sounds like a right pain!
I had planned to take it back to the chemo ward when I go for my herceptin injection next week. They just told me to bring it in.

Speaking of herceptin, do you get given any anti sickness drugs? I reread the side effects and nausea and fatigue are on the list.

[MJK]

So you would think having finished the injections, getting rid of the sharps bin would be straightforward.
Wrong ❌
First the community nursing team said they'd collect it. Then, this morning they call and say take it to my doctor'ssurgery.
Of course, the doctor's surgery wouldn't take it but gave me some letter relating to the council not wanting it dumped in landfill.
So I called the community nurses again who said to take it to the chemo ward (which is closed on Mondays and probably wouldn't take them either).
In the end I took it to outpatients who (although it wasn't their responsibility) took pity on me.

And they wonder why people dump them in landfill... 😦

[WolfEE]

Misyangel - your beautiful

[treehouse]

Anyone know anything about essential oils and chemo and cancer? ( although chemo is over is it still safe?
My sister is sending me some ( reiki trained) and seems keen to help me with healing and balancing emotions.
Any advice?

[Mai7]

MisyAngel, if Botox got through (which is a toxin) Chemo could be a matter of time at the right dilution! Scary thought.......  That's so cool that you have been sitting there on Treehouse's coffee table! 

[misyangel]

Treehouse yes it is me on the front cover as well, can't believe i am on your coffee table

Thanks for all the compliments ladies.  I did read an article that chemo helps with anti ageing but they won't make it common knowledge as they don't want people to have chemo to look younger lol.

[Rosie65]

Hi all fatigue finally caught up with me this weekend, I've been ok most of the way through but think the cumulative effect of treatment is kicking in.

Off to hospital to get bloods done - the usual Monday anxiety, I won't miss it. Yes only two more, finish hopefully on 28th. Hadn't thought of a tattoo on the super vein, but if it gets me through I think it deserves it. There is on only one nurse I trust with it - hope she's there the next two weeks

treehouse - I'm not surprised you've been emotional now chemo's finished. It must be such a relief, I haven't been very emotional so far but feel now that it's building but I'm just trying to get through to the end when I fear the floodgates will open.

Mai and Jay - how amazing you got to meet. Jay - at least you'll recognise two of us at the meet up next May. 

I've also got the horrible metallic taste again so struggling to find half tolerable food. Oh well not for much longer.

Misy - you look amazing , what lovely photos

katie  - good luck with the radiotherapy. I used  to go with my sister to radiotherapy to look after her pre- school kids while she was in there. It didn't take long and then we'd go out for the day! She was only 29 so must have had more energy even with cancer treatment!

[Mai7]

Katie, they're all crazy in Hollywood, it's bound to catch on there!  You can have the flu vaccine as long as your neutrophils are recovered. It isn't a live vaccine.

MJK 😂😂😂😂😂😂 🍉🍳

[MJK]

You look amazing Missyangel. Such a great thing to do. X

I made a boob oo this morning. Half asleep, I put the softee in the wrong side of my bra and put it on. You can imagine. 😁

[katie11]

Just been to take my dog to vets for her kennel cough vaccination as she couldn't have it as its a live vaccine and could compromise my immune system!!! Does that mean we can / can't have flu jabs? Is it a live vaccine? Xx

[katie11]

Oh wow misyangel you look lovely! Xx not sure the chemo for healthy glowing skin will catch on as the new must have craze though mai lol xx

[Mai7]

How lovely MisyAngel, you look gorgeous and so fresh faced and healthy - what's your secret? ...... Oh wait.....chemo! 😂 So nice that you've jumped at the opportunity and inspired others. 💗

[tatyana]

Misy, you look just fabulous in those pics, what a fun thing to do, and how inspiring for us all!

 It's great to know that round 2 of T wasn't so bad for you, I had an okay-to-miserable time with round 1, and I'd been assuming the next one would be worse, so it's great to know that it ain't necessarily so!

Heather, I think the Ryanair thing is a short-term problem, from what I can gather they messed up their pilots' holidays (pilots get holidays? what do they do? take a train somewhere?), but it should all be sorted well before your trip in October.

Had a great boost to morale yesterday in the shape of a half-day with the 5-year-old grandson, who was totally charming (which is not always his default mode!), and when grandad invited him to choose a present from the shop, discovered that the thing he wanted most out of the whole shop was a book of Mr Men stickers costing a whole pound! He then spent the rest of the afternoon excitedly pointing out all the different Mr Men in the pictures. He can always cheer me up!

[treehouse]

I have the leaflet here came through the post last week. Is that you in the little pic on the front cover?
You are on my coffee table!!

[treehouse]

😀😀😀😀😀😀😀misy you look fantastic.

[misyangel]

Heather good luck with your meeting re phased return

Katie how exciting starting radiotherapy this week.

Soworridl - I have found docetaxal far earier than the fec, first round I had lots of aches and was unable to take paracemaol as temp was spiking but second round has been a lot better.   I also took clarityn on my second round, didn't take on first round as liver function was pretty high.  The runs were horrendous on first round but again they don't seem to have been as bad on second one.

MJK fabulous that you are off to york, I have never been there but really want to go and this is on my to do list.

Mai7 I have 7th one next tuesday so off to oncoloist Friday and hoping they give me a date for surgury then.  I have also got to call BCN once 7th treatment gone ahead as they want to book me in for MRI scan.  I can finally see the light

Treehouse glad you are feeling better today, these moment can just creep up on us but I think you always feel better to get it out your system.  Oh not good about losing some more hair grrrr, hope mine doesn't come out,

Ladies I did some hat modelling for the live better with cancer website back in July and I was in their magazine at the weekend, here is a pic of the aritcle.  Back in May they were asking for volunteers of people that were going through chemo so I did a podcasy with them and they then used the article in a blog and asked me to send a pic then they asked me to go to London for the photoshoot which was amazing, never done anything like that before, I even got to keep some of the hats

[Mai7]

Jay, Glad your journey home went well, but wow, 5 hours is a lot! I had the Bombay potato which was a good food for texture and spice.

Katie, hope your rads go well and tell us all about it.

Treehouse, you don't have to be a perfect parent, just a loving one.  I'm not sure if I've found the T easier or not, just different. 

Rosie, you must be due your last chemo, was it the 28th is my memory serves me well?

MisyAngel, you must have chem no.7 coming up soon too. Is it this week?

Raitchr, return to work meeting........ ☹️

Hair news:

I have about 40% of my head hair, it went thinner back and sides recently but started growing on top. 

About 20% of my eyebrows and lashes remain

[treehouse]

Hair:
Lying here in bed I have just counted 5 hairs on my pillow. These are my long ( 1 inch) ones falling out!!! In the past 5 hairs was nothing but proportionally that's a high percentage nowadays!!!
I think I have another week or 2 before I start noticing any increase in my fuzz.

I still have 75% of my eyelashes
And about 50% eyebrows.

Down below the last few are falling out ( TMI)

Legs are regrowing oh of course those would come back first!
Roll on autumn and thick tights and trousers.

[treehouse]

Morning all feeling more me again and can see clearly. Much more resilient. I think it was the ' being a crap parent' that got to me. I have that guilt already and something just touched a nerve over the weekend. Just when I thought I was feeling physically better.
Anyway like you say get it out of my system and move on.

Rosie and the super vein 😀I think you need to tattoo a little cape on it 😂. Well done you that really takes resilience as we all get a good week without appointment or se ( if not more with delays) to recover. Medal 🥇 for you!

Hope your temp is back to normal now Mai. Keep an eye on it . Have you been better on T ?
Katie good luck with radiotherapy this week. Mum did that and I remember going with her for some appointments. Other that a bit like sun burn she said it was easy. And does not sweat from that armpit anymore ( bonus😀👍)

Wishing strong good days for everyone x

[Raitchr]

Morning all, hope you are well.

I have had a busy weekend, my youngest son was 10 yesterday so out and about, playing mini golf, people visiting and out for a meal. So strange to be out in the world doing normal things. Have been so desperate for his birthday as I knew I would be 3 weeks after last chemo so it was a milestone, quite emotional.

Going into work tomorrow to chat about phased return in Dec/Jan so a bit nervous 😓 and have 2 school meeting Wed & Thur pm so life is getting back to normal.

Legs still feel heavy towards the end of the day, I need to get used to a slower pace of life.

I had a panic on Sat when I heard Ryanair are cancelling 50 flights a day to catch up on staff annual leave. We are going with them 19 Oct to Spain for our very much needed week in the sun. They had better not cancellation ours as will be fuming, fingers crossed we are ok. Don't mind being stranded in Spain but have to get there!

Treehouse, I had an emotional time after I finished chemo, it was just the relief that it was over. It is expected and a necessary part of our recovery.

Hugs to all

Heather

[katie11]

Hope you have a better day today treehouse. I felt a bit like that after chemo. You stay strong for your 18 weeks and then can finally release. New day today, or if not there is always caravan pjs xx

Enjoy your time away MJK x

So lovely Jay and mai have met up, guess it is anot odd feeling . Like treehouse says I too have mental images of you all but probably way off too . Lol

Glad you got checked out soworriedl it's always better to check x

Any bell ringers this week? Rosie is it just this week and next for you? Can't believe how well your super vein is doing .!!!!! Think you should have a Superman s tattooed on your arm to honour it lol xxx

I start radiotherapy Friday eeeek! Haven't thought too much about it until now xx

[Jay68]

MJK - enjoy the Novotel in York - one of my most favourite places! I'm hoping to go to York in February to celebrate my big birthday which is actually in January x

[Jay68]

You deserve that Treehouse - enjoy yourself and I too hope you can enjoy dinner - I'm sure you will xx

[Jay68]

Misyangel - I've got a complete covering of hair - mostly dark but with a grey/white edging at the front and sides! At the back I can actually get it between my fingers!

I have a few gaps in my top and bottom lashes but otherwise good.

[Jay68]

Hi Mai - it really was a lovely moment - a real life hug - I really did feel emotional ladies - it was like meeting an old friend who I hadn't seen for a long time! Funny thing is we've never met before - but it feels like we have as we've been on this crazy, scary, horrid journey, sharing lots on the way. I now have another face to a name!

I do like your description of your mouth feeling like you've eaten a cactus - made my husband chuckle when I told him that one!

Did you manage Bombay Potatoes?

We are safely back home - it took a solid 5 hours to reach here but such a memorable weekend truly worthwhile.

Thank you again Mai for taking the time out to meet!

x

[Mai7]

Hugs to you Treehouse, it's understandable that you should feel emotional. You've had to be very brave through chemo and probably feel a sense of relief now it's over as well as some anxiety about impending surgery.  We have to put ourselves through more than we realise and we just find a way to cope. Sometimes you just need to let it all out. Xxx

MJK, I had Bombay potato and it was ok. I've had an Epsom salt bath for aches and pains and straight after my temperature went up to 37.6 but now it's the gack to 37.3 so hopefully it was just a temporary glitch!  I'm glad it's official PJ day - sometimes you just need your PJs and a hug. X

[treehouse]

Hi 😀Really glad you sot back to us so worried.
Not sure what 'normal' is but over 1 is good 👍.
Hope you feel a little less worried. Always check. Several of us have needed hospital admissions due to low neutrophils and the sooner they get you in the better.
X
You also asked about docetaxel. It's best described as flu / road kill. Day 4-8 muscle and bone pain and diarrhoea. Rest and paracetamol and we all enjoy an Epsom salts bath. Oh and the revolting mouth taste.
I have done 6. If I can do it you can too.
Best of luck, feel free to pop in x hugs

[Soworridl]

Evening everyone,
Just to update. I rung the contact number I was given. As temperature starting going up too as well as having the cold. They called me in to be checked over. Had bloods done. Were all fine. Neutrofils 4. Anyone know what the normal range is?
Xx

[treehouse]

Hi soworridl I hope you are ok. Please if you have not already done so phone the hotline and they will either put your mind at rest or get you checked over. They really don't mind. I think most of us May starters have been lucky to avoid colds probably due to the time of year.

So lovely Mai and jay met. I still have mental pictures of you all which I have no doubt are way off 😜.

I think today has been my lowest day since diagnosis. Really struggled to cope emotionally. Needed to get away and get some head space. Husband has been amazing trying to understand and if all else fails just held me till I stopped crying. I think the end of chemo hit today.

Then tonight youngest wanted to know details of surgery. Lots of questions and tears from him wanting to know risks. We cuddled and explained until he seems to understand.

Not enough tissues in this house today !😢

[MJK]

Great to hear that Mai and Jay met up. A bit of wig appreciation is always good!
Mai, I hope you found something you could eat. T days 3 to 8 generally seem to involve lots of carbs and no taste. Enjoy the 🚐 pj time, you've been through 7 rounds of chemo so qualify for big girls pants anyway. Besides T day 3 is a pj day anyway. X

[Mai7]

WolfEE, yes, it was lovely and Jay and I had mutual admiration for our wigs and had a real life hug. You are  right about the half-tolerable! Nothing feels or tastes good. The flavour, the texture and the temperature are all weird.  I'm also feeling achy so I've put my caravan PJs on and will regress to toddler status for the remainder of the day! 👶🏻 I don't want to wear the big girl pants! 🛌

[WolfEE]

Mai and jay you saw each other how lovely 😍
The mouth thing really is the pits!!!!! Hope you find something half tolerable. 🤞