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May 2017 chemo starters

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Re: May 2017 chemo starters

Tatyana, you are doing really well to come on here in the week before your surgery and talk about things. I hid in my shell and didn't  want to talk about it. Like Heather, I also didn't have any dressing on the site when I woke up, just internal stitches and external glue. Was told to avoid getting it too wet for four weeks so no long soaks in the bath. I made sure I had a long soak the night before surgery!

Heather, well done you domestic goddess you! Glad you now have the movement and energy to get things done. I'm ok for making a cuppa and loading and unloading the dishwasher so far. I'm right handed and surgery was on the left side so that helps.

The outward exercises are quite a challenge and I have about 45 degree movement on the one where you lie on your back and put your elbow out. It feels like it's going to take ages. I feel a twanging sensation with certain exercises. Is that the stitches or scar tissue pulling, anyone?  Did anyone else have desensitisation exercises for the triceps? I have to stroke 4 different texture fabrics in upward movements over the tricep area which helps to calm the nerve endings as my tricep area feels quite bruised and sensitive.

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Re: May 2017 chemo starters

Tatanya it's awful waiting to have something isn't it fingers crossed not too much longer of a wait for you for your surgery you just want to get it done and dusted don't you xxxx
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Re: May 2017 chemo starters

Jay that's awful about your dad's second cousin absolutely tragic, I know what you mean about thinking about today's and not tomorrows that why I felt it necessary to get some kind of talking thing to move forward I don't want to be consumed by negatives instead of positives!! Feel very lucky to have Ben able to access treatment as soon many can't it's just sometimes you have a wobble!!
Wolffee il keep fingers crossed they can rush through another app which I'm sure they will under the circumstances x
Hoping everyone has had a good day had Aunty over for a catch up it was really nice to see her oh finally decided to paint the bedroom (Been nagging for weeks!) but it's taking ages as we're trying to cover raspberry walls with white! 5 coats later it's still patchy!!! He's fuming says I'm never allowed to have dark colours again πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚
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Re: May 2017 chemo starters

Heather, you've made me feel better, I was beginning to think the no-drains bit was weird, but if you can do it, so can I, bless you! Thanks also to Mai and Andi for the encouragement. I wish it was tomorrow, I just want to get on with it now.

These moving forward courses sound like a good idea, I'll have to investigate what's available for me. I'm in a slightly ridiculous situation because I live in Oxfordshire but my hospital is in Berks, so although I can have chemo and surgery and follow-up in Berks, they are not allowed to sign me up for any"extras". So if I wanted the look good feel better, or moving forward courses, or even a lymphoedema clinic in the future, I am supposed to go to my GP and get him to sign me up for whatever is available in Oxfordshire. Not that he knows, cos it's not his specialty, so basically I have to find out for myself what exists and then tell him what I want!
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Re: May 2017 chemo starters

Blimey heather I’m exhausted just reading your list. Going for a lie down. Shower and lunch is the best I can do at the moment. X x
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Re: May 2017 chemo starters

Tatyana, I had right side Mx, no recon, no drains, 1 night stay in hospital as allergic to blue dye. Triple neg, aggressive little lump! I didn't even have dressing on wound when I woke up, very weird.

 

Mishy, being TN too it does scare me with reoccurance but you just have to get on with life, the moving forward course has helped me. TN responds the best to chemo compared to other BCs so keep that in mind.

 

Hope everyone else is well. Decided to start working on my never ending to do list today - defrosted freezer this morning, chilli in slow cooker for tomorrow tea, wardrobes and drawers being sorted...

 

Heather

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Re: May 2017 chemo starters

Best wishes for your chem today Andi, you're near the end of the tunnel. X

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Re: May 2017 chemo starters

Hi Ladies, indeed this is all very scary stuff but then life is full of uncertainty. Having a scary disease, at least you learn to appreciate what you do have.  I have anther Physio appointment through for next week and Oncology appt next Thurs to discuss starting rads. Took my first Tamoxifen pill this morning! Tatyana, just take it easy after surgery and keep up the exercises but don't put too much effort into them. Your body will naturally tell you how far to go. Treehouse, glad your heart rate has come down and you're getting over the cold. WolfEE, hope rads planning goes better than time. Rosie and MisyAngel, gentle hugs and hope you are recovering well. Mishy, yes talk therapy may help, I have an appt to see my GP next Fruday to discuss moving forward. Jay, terrible news regarding your dads cousin.

Hope you are all doing well in spite of it all. πŸ’—

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Re: May 2017 chemo starters

Tatyana - Can’t believe how quickly everyone’s operation dates come round.  I know what you mean about entering the terror zone.  I’ve already started quietly flapping about it and I’ve still got 7 weeks to go before that happens.  I think each new situation we are put through, each one brings apprehension, but we’ve all proved that we can get through them.  So next Thursday is just one of those new situations which you will get through lovey because you are strong πŸ˜ƒπŸ‘πŸ»

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Re: May 2017 chemo starters

Misyangel -  it’s good to hear your healing really well and like the results!! Definitely no washing up for you and your nails!!! Glad hubbys about to pick up the chores πŸ‘πŸ»

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Re: May 2017 chemo starters

WolfEE - Sending you lots of best wishes for today’s CT scan, fingers crossed they’ve got their act together!!! 

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Re: May 2017 chemo starters

Hi Rosie,

 

I love your positivity and that you are on the other side of your surgery! You certainly get the medal for longest surgery. And your family get one for getting through the wait.

 

So pleased your out of ICU and have a nice quiet room to yourself. Time to take things nice and easy now as you recover.

 

I’ve got chemo today, then one more session after that 🍾 My DIEP op is 7 weeks away 😬

 

Sending you hugs and best wishes xx

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Re: May 2017 chemo starters

Hi misyangel good to hear from you. So glad you are recovering well. The nails definitely become a problem way after Chemo finishes! What’s that about???
Just as the hair grows back the nails lift.
Hubby said wow you were in hospital ages look how much hair you have now!!!!
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Re: May 2017 chemo starters

Treehouse glad your heart rate has come down 

 

wolfee hope the rads appointment  goes better today after yestersay

 

rosie hope you are recovering well, I was only gone two hours longer and my family were so worried so really feel your family 

 

I am healing really well, my hubby took dressing off yesterday and it looks good, I am also not having much discomfort and have stopped the codine last night.  My nails are more sore lol, feel like a few are lifting and they are giving me more grief as it's surprising how you catch them πŸ˜†

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Re: May 2017 chemo starters

Treehouse, glad your heart is starting to behave itself. Book yourself in for that flu jab, you've had enough illnesses for one year! I know what you mean about the lost months. So much time gone in a blur. Can't even think about Christmas, but the rest of the world is well into it already. I'm still waiting for summer!
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Re: May 2017 chemo starters

Μai, it's tough that your results only yielded uncertainty, it seems that's what we have to live with now. It's not easy to focus on the positive all the time. But clear margins is excellent, and so is tamoxifen, it's good that they've already started you on that. And now maybe the new drug if you ever need it in the future, apparently it's only for when the cancer has spread, so let's hope you will never need it! I can't remember, are you having rads?

My surgery is next Thursday so I'm entering the terror zone. All tips welcome! I'm having a right Mx, no reconstruction, they are saying I'll only be in one night and will be going home without drains. Anyone have experience of this?

I'm locally advanced, grade 3, triple negative, and can't have rads because I had them before in same area. So you can imagine I'm hoping the surgeon does a great job, as I've no other weapons left!

I hope everyone is enjoying the bright sun, cold as it is.
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Re: May 2017 chemo starters

Ha ha not been well enough. Maybe next week. Dr mentioned it too but said to wait.
Definitely do not want flu πŸ€’
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Re: May 2017 chemo starters

Good luck WolfEE with the rads planning (2nd time around) today - hope all goes well and you find out why it all went wrong yesterday. x
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Re: May 2017 chemo starters

Jay sorry to hear your tragic news. I have no words. Some things just don’t make sense. X x x
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Re: May 2017 chemo starters

Treehouse out of interest, did you ever get round to getting the flu jab done?
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Re: May 2017 chemo starters

I know Treehouse - it's really scary in the thought that time seems to have flown by in one way and yet in the midst of those balmy sunny summer days - they seemed absolutely endless (unfortunately not in a good way!).

I'm in need of dentist well more hygenist - I really feel my teeth need a good clean, however, think I'm going to wait til next year as I also need optician check and I've heard rads can also affect and so best wait til that's out the way... ongoing appointment planning....!
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Re: May 2017 chemo starters

Hi Jay. I do have a dentist appointment sometime this month so will be having a long chat.
They phoned me just after surgery to remind me my next appointment was due. I thought they mad a mistake as I had gone especially just before Chemo. Then I realised that was 6 months ago!!!!
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Re: May 2017 chemo starters

Treehouse - the super πŸ› killer. Thank god your also on the mend I can admit now u has me a little worried. Xxxxxxxx 😘
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Re: May 2017 chemo starters

Good morning Treehouse - so relieved to hear your heart rate has stabilised and fingers crossed the bug is going.... have you got to visit the dentist now to get the teeth looked at?

 

I feel the same as you -the future will be very different as research is happening all the time and progressing rapidly.  As you say being HER2+ would have been a very different story 10 years ago.  None of us should think too much about tomorrow - today we're here - unfortunately, life has taught me a harsh lesson, I've seen people close to me, who have died suddenly with no real warnings. 

 

Recent news local to where I live - a lady out driving last Friday afternoon having been out with a friend for lunch - killed instantly by a driver who had committed a burglary at a private residence and stole the car, following the crash he fled the scene - however, police have located him and have him for questioning.  Turned out the lady who sadly died was second cousin of my Dads - absolutely tragic.

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Re: May 2017 chemo starters

Rosie darling how are you today. 13 hours!!!
So one DIep and one implant and a nice flat tummy not as planned but still two nice boobs and over. Intensive care Christ your family must have been going out of their minds. Do you have lots of drains?
When did you have oopherectomy?
I’m thinking to have mine Easter time (before my recon and second mastectomy) this could perhaps delay me having DIEP about this time next year?

I hope you recover quick and feel ok today you’ve done amazing it can only get better now each day you’ll improve more and more. Xxxxxxxxx
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Re: May 2017 chemo starters

Hi mai on bbc if you have a free view tv, we have sky multi room down stairs and freeview upstairs (for when it snows and the sky goes off) can’t be without tv, proper square eyes. Sad to still use teletext but on the news. World news, business and markets and health there is a lot more items than on mainstream news and what’s in the papers, that’s what I’ve found things break earlier on teletext for some reason. Thanks treehouse, but rough last night for first time, so early night and feeling much better this morning, glad you are doing better too 😘😘much love to everyone ❀️❀️❀️Hope everyone has a steady day and mai hope you cold clears off soon so you can get good nights sleep. πŸ’•πŸ’•βœ¨βœ¨shi xx
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Re: May 2017 chemo starters

Mai sending big hugs to you I too read the article for the drugs re treatment for bc and it was a daily pill, it's bloody hard not to worry about the future of had my surgery at the beginning so it's a little different to you Mai but noone has ever sat me down 5am explained recurrence risks properly to me apart from the bit that being TN the recurrence risk usually in a shorter period of time after treatment which scares the **bleep** out of me as I can't take any pills or anything and like you I don't want to end up a raving hypochondriac you're one tough cookie but you still will feel these emotions, my doc has suggested some talking therapy for me to help me come to terms with everything as I feel I am not dealing with that side of it very well xx
Treehouse so glad to hear things are starting to settle for you you have been through enough, you need a break!!
Rosie hope you are feeling well today after your surgery,
Hope they get you sorted Wolfee what a bummer for you so frustrating fingers crossed not too long
Misyangel hope you are well too take care and love to all of you πŸ’–
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Re: May 2017 chemo starters

Morning ladies.
Heart rate stayed in 80s all night so I think my body has finally kicked the bug πŸ›.
Mai I know it’s hard but try not to worry bc really is a research priority and advances are happening all the time. The future will be very different to the ordeal we have just been through. We are all getting there. And have so much to be grateful for. 10 years ago her2 grade 3 would have been a very different story for me.

How you doing Rosie been thinking of you and you family x x x x
Misyangel I hope you are recovering well at home.
Wolfee I hope you get some answers today and rads can get back on track.
Shi 🌈✨I hope se are manageable x x x
Take care warriors x x x x
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Re: May 2017 chemo starters

Thanks for sharing the link Treehouse. Interesting article and I should be eligible for the drugs according to the criteria. Hope your heart rate stays down.

Shi, I didn't know teletext was still available!

 

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Re: May 2017 chemo starters

Rosie my lovely you have been through the wringer!
Wow that’s a lot to wake up to and digest.
Take it slowly you need to be kind to yourself to recover.
Very gentle hugs. Stay in hospital as long as you can.

I am starting to feel better tonight. I am wearing my sons Fitbit to monitor heart rate. It is definitely coming down thank goodness.
Honestly I have started praying ladies.
Thinking of you all. What a bloody week!!
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Re: May 2017 chemo starters

I know teletext on bbc old fashioned but it’s amazing what news you find out on there that’s not mentioned on normal news. It says research shows the drugs slow down advanced cancer for at least 10 months and can delay need for chemo so not something any of us need to look at right now, but worth knowing about. 😘😘love shi xx
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Re: May 2017 chemo starters

Shi, Gorgeous cute cats.

Thanks everyone for your love and support. Xx

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Re: May 2017 chemo starters

Shi.......Teletext?? 😱 Are the new drugs chemo drugs or can I just ask for some on prescription?

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Re: May 2017 chemo starters

Mai go in sept thread and see Mrs meow’s photo of her 2 cats she just posted, that’s all of us doing that to you right now. 😘😘love shi xx
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Re: May 2017 chemo starters

Wow, Rosie, that is an unbelievable surgery time. Sorry things didn't go to plan but glad you are Ok and out of icu now.  Take it easy and I hope you sleep well. Gentle hugs to you. Xx

Treehouse, I'm clinging on tight to those clear margins. I'll cling to anything I can right now. Yes, we will definitely meet up next year. Maybe we should private message on that one for organising? 

WolfEE, I read the Tamoxifen leaflet on here and it suggests that it can be given after surgery or during radiotherapy or after radiotherapy so I wouldn't get too hung up on not starting yet. 

I think you want your results to reveal some certainties but they don't and that is the uncertainty that we continue to live with. No one can give us a magic probability because we are all unique individuals.

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Re: May 2017 chemo starters

😘😘😘mai, big hug and lots of love. As wolfee says, keep hold of the clear margins mai, it’s hard when you get a bit of good news like that and then get told the but, that’s how I felt when they said clear margins but tn, it’s a bit of another gut punch, but choose to remin positive and fight, I know how hard you are mai and what a fighter you are and rads and tamoxifen are going to mop it up. Those 2 new bc drugs that nice have approved for use in England are palbociclib and ribociclib, it’s on teletext. Rosie, wolfee, treehouse 😘😘😘and 😘😘😘to everyone too. Love shi xx
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Re: May 2017 chemo starters

My goodness Rosie - 13 hours in theatre - and a day in ITU. I can only imagine what your family were going through.

I'm pleased to hear you are happy with what they've done.

It sounds like a hotel room rather than a hospital! Enjoy a good night's sleep xx
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Re: May 2017 chemo starters

Oh Mai sorry to hear you felt vibes of uncertainty. You do have clear margins so that's good news. Did they mention rads to you?
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Re: May 2017 chemo starters

WolfEE the CT scan they do for rads is not diagnostic, I'm sure you have nothing to worry about. Did they explain why this could have happened?
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Re: May 2017 chemo starters

Well seems like things haven't gone to plan for a few of us this week.

 

I spent 13 hours in theatre and have come out with one DIEP flap boob and one implant. And spent the night and most of the day in intensive care. I'm on the ward now, but am happy that I've had my mastectomies, got two new boobs and a lovely flat stomach.

 

My poor family we're going out of their minds with worry while I was blissfully unaware.

 

It seems that possibly due to procedures to my tummy previously - oopherectomy, c section some of the tissue used didn't take despite the best efforts of the surgeons.Although they will never really know why it failed. They are unhappy and want to rectify the implant but I can't contemplate that at the moment!!!

 

I have my own room, own toilet and shower and a tele. So really can't complain,  should get a good night's sleep at least.

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Re: May 2017 chemo starters

Oh Mai sending hugs.
My folks tell me a new therapy for ER + bc has just been approved. Have not been watching news in hospital but it gives us extra chompy monsters if there is a next time.
Hang on to the CLEAR MARGINS.
It has gone x x x x x
I know you are scared.
Me too.

Is it time to start thinking about next May and meeting ?
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Re: May 2017 chemo starters

All day I’ve worked myself up thinking they never did my radiation because they saw something weird on the CT scan I’m sure it isn’t but my head just goes in2 overdrive
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Re: May 2017 chemo starters

Mai, yes we have a lot to deal with and I have to admit when I got my results I was heart broken because I was expecting great results from the chemo but I had almost no response my tumour was still the same size just a different texture. What I have been told a few times now by various doctors is that ER+ doesn’t respond massively to chemo and I think we are both 8/8 the highest 100% so it’s not that surprising actually (I just wish this could have been explained earlier) for the hormone types out greatest aid is the tamoxafen or hormone treatments. So I know it’s hard Mai but we must keep positive and not be down over the pathology results. The radiation also is brilliant will clean up what the chemo couldn’t quite manage.
I can’t beleive u have the tamoxafen already I’m not going to be starting until after radiotherapy (if I ever start it) have you thought about overies? It’s all to much to think about really.
Xxxx
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Re: May 2017 chemo starters

WolfEE, sorry your rads didn't go to plan but hope all goes well for tomorrow. Hugs. I think we have such a lot to cope with and if things don't go exactly to plan we go a bit wobbly and anxious. It's understandable that you should feel gutted. Xx

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Re: May 2017 chemo starters

Hi Ladies, hope you are all doing well. πŸ’— I got my surgery results this afternoon. I felt vibes of uncertainty rather than positivity. I had clear margins around the tumour which was 5cm of cancerous tissue but 9cm of abnormal tumourous tissue. A total of 12 nodes were removed of which 9 were positive. Apparently some of the nodes shrivel up with the chemo so they just remove those left. I sound similar situation to you WolfEE? Can't remember how many nodes you had positive though.  I was also given a  prescription for Tamoxifen which I will start taking tomorrow. They consider my risk of recurrence to be high (a partcularly nasty locally advanced cancer) so just have to wait and see.  Trying to be optimistic but have to be extremely vigilant about my body now and go to the GP like a paranoid hyperchondriac! Drinking my 3 green teas a day, having some kale for tea! 

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Re: May 2017 chemo starters

So my radiotherapy never happened.

For some reason they couldn’t position me correctly they tried three times then had to stop because they are not allowed to do more than 3 CT scans in one day. Tomorrow I start from scratch again. I have a new planning appointment they will measure me again and take images etc etc not sure if new tattoos again then it will be presented to the radiologist again and they will do what ever they do and I’ll get new dates. I hope it will be soon and not another two week wait??

I’m not entirely sure what happened I’ll try find out more tomorrow.

Gutted really I’d geared myself up 2 start today and I had my finish date in my head and planned things around it.
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Re: May 2017 chemo starters

Thanks ladies - herceptin injection number 4 went well.  Wish I could have avoided the one hour and 15 minute wait for it!!  At least I had my Dad with me for company and conversation!

 

Hope Mai got on well and well done to Shi for FEC no 3! 

 

I wonder how Rosie is?  - painfree and enjoying a good rest hopefully x

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Re: May 2017 chemo starters

I didn't get to ring the bell wolfee we didn't have one on our ward we have one on our rads though I do think chemo finishing is a mixture of emotions including fear that the security blanket of chemo is being removed!
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Re: May 2017 chemo starters

Mishy, after I finished my last chemo I rang the bell then had to sit back down and wait for a letter f on the doctor about my blood thinning injections before I could leave.
I sat looked around at the chemo ward and then cried and cried couldn’t stop it so was the first real uncontrolled cry I’d had and I still don’t even know what the tears were. Relief, sadness, happy because chemo done, scared that it was over??? X