September 2018 Chemo Starters.

[GabyF]

Hi Pulapula,

What a reilef this must be for you - brilliant news! Will you need to have any treatment for the cysts?

I was very interested in you comments about your tumour. I suspect that I will be in a similar position, as I am tripe negative and the tumour can no longer be felt. You don't seem to have been given a lot of time to make these major decitions, but I hope that you can get lots of support in this process from your oncologist and BCN. Do you have a Macmillian or Maggies Centre you could approach as well? They probably wouldn't give you specific advice, but perhaps they have someone who can talk the options through with you?

Enjoy your Xmas shopping!

Gaby x

[Lisa-T]

Ahh that’s such a relief Pulapula ❤️ so pleased for you. Good luck with your decision about surgery ... you get bombarded with info and it’s hard to know what to do for the best.

Fantastic to be ringing that bell before Christmas MamaTony ... I’ve got my last T on 27th December so will also be celebrating and bubbling 😂 Not seen a bell at my unit tho (it’s only a small unit) so might have to take my own bell 🤣. I think I am also leaning towards DIEP flap reconstruction, when I’m ready for reconstruction (can’t face it yet). It’s amazing what they can do ... can even get my other boob made a bit bigger ... every cloud 😂 xx

[Pulapula]

Hi all. Just an update from today. Feel so relieved that the lumps I found in my good breast were cysts. Phew.

I’m a bit disappointed that the chemo hadn’t shrunk my tumour as much as I and my oncologist thought as it can’t be felt anymore. It was about 30-35mm before and was still 24mm in length (although in 2 bits and flatter than before). I have the option of breast conserving surgery (lumpectomy) or skin and nipple sparing mx with reconstruction. I’m thinking the latter as I’m triple neg and worried about recurrence. But recovery is longer. Surgery booked for 21 Dec so I need to get organised about xmas!!!

[MamaTony]

Hi Everyone,

Not posted for a wee while.

So happy for you Gaby that is great news. My tumour shrunk by 1/3 after one docetaximol which I was delighted about, however, have had 2 more and doesn’t seem to have changed which is disappointing☹️ They do say can be scar tissue and not all tumour as a result of the biopsies so hoping it’s that 🤞 Just one more docetaximol for me on Dec 20th and will be ringing that bell 🔔 and bubbling like a 2 year old 🤧🤧🍾🎉

Hope your mouth feels better soon Kath.

Next stage for me is meeting with plastic surgeon on Monday re operation in jan. Need to try and persuade them I want a double mastectomy and not a single one as they are recommending. Should get result of genetics testing any day now and they said if was positive they would do the double but I want it either way. I’m triple negative so want to lesson the risk of reoccurrance.
Researching the DIEP flap reconstruction which is a scary thought both the op and the recovery, however it has been referred to as the gold standard for reconstruction, anyone have any experience of it?

Hope everyone is catching up with their missed sleep 😴 and SEs are calming down. Lots of love 💕

[Lisa-T]

Morning all,

Big hugs for today Pulapula for your results ❤️ Will be thinking of you xx

Sorry you had to cancel your treatment this week Kath - it’s really frustrating but probably for the best as it needed doing asap! Hope your tooth pain has eased today ❤️

Fantastic news about your lump GabyF 😘 Hope all goes well with your last Paclitaxel today - a great milestone to reach - feels like we are actually getting through this nightmare Xx

Hope everyone has a good day xx

[Jacqs]

Sending a big hug Kath. Sorry your in pain and hope it eases tomorrow. It’s really frustrating when you have to miss a week, but best to deal with the immediate problem. Take care xx

[Kath1977]

Just an update.

Chemo has had to be cancelled for this week and I've spent the afternoon at dentist.

Had to have 3 big fillings. Am in pain tonight.

Thank you all for asking about me.

Hope you are all coping and had a good day.

Love

Kath xx

[Jacqs]

Hello Ladies,

So happy to hear your positive news Gaby 

Pulapula - sending you lots of positive vibes for a good result from your mri tomorrow.  

Kath - so sorry to hear about your tooth.  Were they able to do any dental work.  How are you coping with it? I can’t quite imagine how you deal with dental pain on top of all the other sh*t. 

A Little Pixie - hope you enjoyed the time with your mum & sister.  I’ve got my family visiting on Sunday for a pre- Xmas get together.

We saw the Fantastical Beasts film yesterday - very good.  Setting the scene for a few more films to come I think, although I did doze off at beginning.  Oops 😴😴😴

[GabyF]

I skipped out of my oncologist'office with a big smile this morning: she can't feel my tumour anymore!! 🎉 ☺ 🙃 Of course I know it's still there, but somehow the fact that neither of us can now locate it seems so much more exciting than the rather more scientific MRI.

Tried getting hold of someone at Guy's to find out about my genetic test, but ended up just leaving a message for some admin person. Frustrating! 😤

Gx

[GabyF]

Hi Pulapula,

I really hope they can work out quickly what that lump is. Waiting for results is so nerve-wracking. Christmas shopping sounds like an excellent idea for taking your mind off things. Enjoy yourself ☺.

Thanks for getting back to me about your genetic test. That's amazing they got back to you so promptly. I had my test 10 weeks ago and am still waiting 😡. I'm waiting to see my oncologist in 30 minutes so will ask her if she can chase it.

Lovely sunny day here in London, so I walked to hospital. It's good getting some fresh air, sunshine and gentle exercise.

Last Paclitaxel tomorrow, then 4 rounds of EC. Feels like a good milestone. ☺

Have a good day everyone.

Gx

[Pulapula]

Thanks Lisa-T, I hope it is something similar - I’m feeling a bit better about it now. Maybe some retail therapy tomorrow will help. Need to get organised for Christmas anyway.

Hope you get to see wicked on Saturday x

[Lisa-T]

Hi Pulapula,

I also found another lump a few weeks ago and it turned out to be breast tissue that had hardened!

It’s the waiting for results that’s the worst bit and you feel like you are going back to the start again. Hope you don’t have to wait too long for your mri results. Stay positive ❤️ Big hugs. Lisa xx

[Lisa-T]

Evening everyone,

Pulapula - Ahh so sorry to hear you’ve found another lump ... try not to panic (I know that’s hard) ... it could be anything. Doesn’t stop the worry, and you will, but stay positive ❤️

ALittlePixie - I hope your Mum didn’t get too much of a shock with your new look. Enjoy your early Christmas celebrations 🎄

Galligirl - hope your leg pains ease soon 💪🏻 ❤️

GabyF - Hope you get a better nights sleep tonight - I’ve always liked my sleep so I struggle when I wake up too early 😴 Although it is quite handy for a bit of online Christmas shopping 😂

Kath - what rubbish timing for your cracked molar - hope you get it sorted soon

Got my 2nd T on Wednesday 😬 at least I know what to expect this time. I’m hopefully going to see Wicked on Saturday. Booked it nearly 2 years ago so determined to go 🥊💪🏻 ... just hope I don’t fall asleep 💤 🤣

Keep going lovely ladies ... hope you all have a good week xx

[Pulapula]

Hi Gaby, I think someone on this group had something similar with a new lump in other breast and it turned out to be a cyst (I’ll have a read back shortly). I think I’ll call my BCN tomorrow just to make her aware and see if my MRI results are back yet.

I am relieved about the genetic test result. Whilst it would have given a reason why, it’s good to know as I have a 13 year old daughter. I had the test done on 10 Oct and they tried to ring me last week but sent a letter instead so that was 7 weeks?

[GabyF]

Hi pulapula,

Definitely not an easy day for you - I really hope that lump you found turns out to be nothing to worry about. However, the result of your genetic test is fantastic, you must be so relieved. I'm still waiting for mine to come through. How long did you have to wait?

Gx

[Pulapula]

Hi kath - hope you can get your molar fixed and that it’s not causing too much pain.

Sorry to hear some of you are not sleeping well. I tend to sleep ok once I’ve drifted off but sometimes find the drifting off bit hard.

Alittlepixie- hope you enjoy your family time. My mum was upset about my hair at first but soon got used to it.

Bit of a mixed day for me. I had my post chemo mri on fri and get the results weds so I’m all geared up for the surgery discussion. As my lump had shrunk I was feeling good. But I’ve just had a shower and found a new lump in the other breast! Trying not to worry and at least we’ll have the scan results on weds so will know what’s going on. But it was a shock to find it! Trying to convince myself it’s a cyst or hormonal response to having my mirena coil removed on Friday.

On a positive note, my genetic testing results came today - they were negative so that is a big relief in terms of worrying about my 13 year old daughter and my sister.

[GabyF]

Morning everyone,

I did eventually drift off and have just treated myself to a lovely facial, so not feeling too bad now. I'm relieved that so many of us seem to have this problem. Our poor bodies and minds are having to put up with so much rubbish, I suppose it's not surprising we can't sleep properly.

LittlePixie: we're hoping to see Fantastic Beasts this weekend. I just hope I stay awake! 😀

Kath1977: what miserable luck! How many chemo sessions do you have left? Can you keep the temporary filling until you're done?

Have a good day, lovelies! 😘

Gx

[Kath1977]

Morning everyone.

I'm having a nightmare, cracked half a molar on Friday eating a subway as well as dealing with side effects.

Been to dentist this morning and can't do anything temporary. Needs a big filling.

Has anyone had any dental work while on chemo?

Am waiting for my oncologist to phone me back.

Hope you are all managing these horrid side effects and stay in the warm.

Love to you all

Kath xx

[ALittlePixie]

Morning everyone!!!
So sorry to hear you're not sleeping Gaby. I'm hoping in time our bodies will settle down and our sleep patterns return. I use music to help me drift off and I use meditation apps as well...Insight Timer is a good one that I use in the middle of the night.
Galligirl, I really hope those SEs ease quickly. I really feel for you cos it's so horrid. I used my heat blanket and baths to help ease the pain.
Jacqs - a cinema trip sounds heavenly, do enjoy! We're hoping to take Eve to see Fantastic Beasts soon. The cinema is an hour away tho so I need to build up a bit more energy first.
Aley - hope the sickness has calmed down now.
My sister and mum are coming to visit from Leeds for 2 days today, so I'll be celebrating Christmas early. I'm really looking forward to seeing them as I've not seen them since my chemo started. I'm hoping my mum doesn't cry when she sees me with no hair. She's 83 and very forgetful so I keep reminding her I've lost my hair so she doesn't get a shock.
Wishing everyone a lovely week ahead and hope those pesky SEs don't cause too much trouble for you. Lots of love xxxx

[Jacqs]

Morning Everyone,

Its awful not being able to sleep. Friday night I was awake will 3.30am, then Saturday spent most of the day snoozing.  It’s so hard to break that cycle especially when you just feel yuk.  

Hope you managed some sleep eventually Gaby.

Aley I hope you had a better weekend and that your SE’s have now calmed down.  

Its pouring down here, so we’ve decided on an afternoon at the cinema.  Always feels like such a treat.

have a good day all xx