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August 2019 Chemo Starters

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Re: August 2019 Chemo Starters

Dear Wolvesgirl,

 

Paranoia has definitely set in for me! I am 45 but having completed chemotherapy only on January 10th, I doubt my immune system is back up to scratch. Not sure how much to go out or seeing people but at least self isolation is not an issue as I have been doing it since last August!

 

My second operation went well - I think, I was surprised the surgeon didn’t come to see me afterwards. To be honest I am a bit fed up with it all, but the end is in sight now.

 

My hair is slowly coming back but it’s still fairly patchy on top, so a bit longer before I can take my hats/scarves off. My fingernails are also looking better and the nail varnish is helping me a lot (psychologically I mean!). So is the eyebrow makeup, it’s a life saver! Unless I have been imagining though, I think I saw some tiny hair back on my eyebrows, let’s hope that’s true!

 

 I hope you are all having a lovely weekend. I also hope they close the schools soon, I like having my children around.

 

Much love,

Hollyleaf

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Re: August 2019 Chemo Starters

Hello everyone

 

So its Friday again and the world seems to be going mad so I thought a few minutes of sanity and group support on here was whats called for.  Have just read that the Premier League has been suspended for a few weeks - I will have one very unhappy husband!

 

Lisaloo - Hope you are feeling less sore and uncomfy now - do you still have the drain in?  You are right about listening to your body - remember recovery is two steps forward and the odd step back - its nothing to worry about, just your body mending.  

 

Spottycotty - sorry you had a bit of a time in the scanner - you made it sound amusing but I bet it wasn't and hopefully you will have had the results by now.  It does rather seem that there is always something doesn't it?  I naively thought we would all be skipping off into the distance by now having completed treatment.  How much longer will you have the integrated hair system?  Sounds fascinating.  My hair is fine - short but looks OK.  

 

Hollyleaf - Hope all is good with you and you continue to improve.  How is the hair growth going?

 

Blackcat - two weeks down for radiotherapy so nearly there - hope you haven't got stuck in the doors again!  Thats not great is it?  Hope you are still feeling OK and are not too tired.  Do you have to take the bisphosphonates every day?  How are you finding them? 

 

Julie - Glad that things are moving on for you - to get the portacath out must have been great!

 

Daisy - like you I am TNBC but I have had a different pathway as they didn't see it initially and I went to theatre for a WLE for DCIS - it was only on histology that they saw the cancer.  So I had surgery first, then chemo and then radiotherapy.  You will get through this - it seems such a long journey looking forward but it will go.

 

So my news, I continue to recover from the pneumonia - still aching a bit but have cut down on analgesia and just taking a couple of brufen a day to take the nagginess away.  Mainly my shoulder and my left side which is where my lung had collapsed.  It is better than it was.  I am still a bit breathless but I can take a big breath in now which is what I couldn't do before.  I have a cough but that is improving.  I have been out for the odd walk, have driven to the Co-op (whoop) and generally got doing a bit more each day.  I am terrified of getting C19 now!  We are supposed to be taking the eldest grandson to Liverpool next weekend but we shall see.....  I might stay at home.  

 

I seem to have a period of clinic appointments coming up - Dexa scan tomorrow, Echo on Monday and then oncology on Friday so lots to do!  

 

Hope you are all OK - please keep safe, my recent experience shows, I think, that we are not as over the chemo as we might have thought.  Much Love xxxx

 

 

 

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Re: August 2019 Chemo Starters


Hi Daisy 

think we have every right to be moaning minnies! I’m so sorry you couldn’t have number 6 today.. it’s very frustrating when your counting them down and you just want them out the way. 
keeping my fingers crossed for you you’ll be ok to have it next week and get back on track. 

big hugs 

Lisa xxx

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Re: August 2019 Chemo Starters

Hi Lisa

Glad to hear each day your feeling better . Its horrible feeling tired but just take it easy as you can .

Im a bit fed up today as my white blood count was to low for me to have my 6th session of chemo . 

Just feel disappointed as counting down the sessions.

My daughter is off to Bangor university in September and i just want to be all sorted and well.

Experiencing more chest pain today too which isnt helping.

Sorry to be a moaning minnie ! 

Sometimes it just feels never ending.

Sending you lots of  good wishes 

Love Daisy xxxx

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Re: August 2019 Chemo Starters

 

Hi Daisy

 

I’m glad I’m giving you some reassurance 😊 I hope you managed to get your 6th cycle out the way today.

Im feeling ok today, movement and pain seem to be getting easier as the days go on. It’s just a strange and uncomfortable feeling really. The tiredness still keeps coming over me. I don’t think Iv ever fallen asleep sat up until now 😂 

 

anything else worrying you or you need advice on please don’t hesitate to ask.

😘 

 

Lisa xxx

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Re: August 2019 Chemo Starters

Hi Lisa

Thank you for replying and sharing your experience.  It makes me feel more reassured that what im feeling is normal.

How are you feeling today  ? I hope your pain is better and that you gain more movement as each day goes on. 

 Im due to have session 6 tomorrow but the hospital has rang to say WBC is low so will need bloods to be retested in the morning to see if can go ahead.

Havent felt to great today due to numbness in left heel  so difficult to stand. ( This happened a couple of  weeks ago too. Keep trying the ibuprofen gel ) 

Just so up and down each day. 

Sending you all the very best wishes 

Love Daisy xxx

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Re: August 2019 Chemo Starters

 

Hi Daisy 

 

I know exactly what you mean about just wanting it out of you and the worry of if it’s shrinking or not. The thought of it in me i struggled with so I don’t think your alone there. 
I’v an appointment with the plastic surgeon for reconstruction at the end of August. I was offered immediate reconstruction but couldn’t get a date when both my surgeon and the plastic surgeon could be together at the same time any time soon. They wanted to get the mastectomy done so I will have reconstruction done at a later date. 

After my mastectomy i stayed in for one night. I could of gone home the same day if they were happy for me to but I asked to stay in for one night. Just because I felt more comfortable being where I could be looked after as I’d never had an operation before if that makes sense. 

All of these things your feeling and worrying about are totally normal. We’re all here to help each other along this **bleep**ty journey. 

😘 Lisa xxx

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Re: August 2019 Chemo Starters

Hi Lisa

Thank you for your reply. Sorry to hear that you are feeling tired and uncomfortable.  I hope each day u start to feel better and pain gets easier.

Thank you so much for all the information its so so helpful to me.

My tumour is 5.6cm x 4.8 cm . 

I will keep drinking with EC treatment Thank you . Im having to have 4 cycles of Ec every 2 weeks and will keep taking the anti emetics too.

Did u have any reconstruction surgery ? Or was it an option ( sorry if that is to personal to ask please dont feel u have to answer ) . Did u have to stay in Hospital? 

I was just not sure what to expect as no one has said what will happen at that point apart from more than likely mastectomy unless it shrinks they may be able to do less surgery but i just will have what ever i need to get well again and be pain free.

Just find it so hard psychologically to keep wondering if its shrinking ???? 

I cant feel anything and never felt a lump etc in the first place. Had a recent Chest xray as i had a bad cough but luckily it was clear so could get on with the Chemo. 

I just struggle to enjoy having a bath now as i just want it out of me if that makes any sense. 

I feel like every day im just waiting to have the surgery really. Did u feel like that ? 

 

Sending you a hug 

 

Love Daisy xxx

 

 

 

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Re: August 2019 Chemo Starters

 

Hi Daisy. 

Its no problem at all, I remember having all the same questions in my head that I wanted answering, it’s all very scary and so much unknown!

Im feeling ok thank you, tired and uncomfortable and the same as you I’m climbing the walls! Everyday is getting easier with regards to pain and movement though.

 

So with the Chemo I had the EC first and I’m not going to lie to you I found the paclitaxel easier than the EC. Saying that the side effects were kind to me and I didn’t really suffer with sickness all the way through. I just found the EC gave me more of a fuzzy head. Are you having the EC very 3 weeks? Make sure you drink loads of water! 
Once I’d had my 4 cycles of EC i had an ultrasound scan to check progress and yes it had shrank it, so much so that they couldn’t really see anything. They then carried on with the 12 weekly cycles of paclitaxel which I finished on the 24th January. I then had my surgery on the 4th March (last week) 

The choice of surgery is much the same as the chemo.. no one has to have it if they don’t want it. But yes it is needed to beat this. I had 2 tumours one 22mm and one 8mm so a lumpectomy wasn’t an option that’s why I had to have a mastectomy. 

Hope thats all been helpful for you Daisy..Anything else please just ask away. 

Lisa xxx

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Re: August 2019 Chemo Starters

Hi Lisa

Thank you so much for replying to me it means  such a lot .

How are you feeling following your  surgery. ? I hope you are recovering well and  every day is a better one.

My diagnosis came as bit of a shock as i was being treated for chostocondrotis for 3 months due to the chest pain and it was only to rule everything out by chance i was referred to the Breast care service. I was not due to mammogram etc as im 48. It was then i was diagnosed with TNBC grade 3 with 3 lymph nodes affected. This is why im experiencing the pain as the tumour is pressing on the nerve in my chest. Life has been difficult as im usually very independent looking after my two children and working but ive not been able to get out of the house properly( the odd pop to local shop ) since October due to chest pain and shortness of breath. Im climbing the walls with boredom!!  

I started chemo on 4th February. 

 Ive had a few different side effects on the Paclitaxel and carboplatin.  The main one being indigestion/,excess  gas and stomach cramps.  Ive got next chemo on Wednesday . 

Could i please ask if u dont mind Lisa.

When did they scan to check Progress? Did your Tumour Shrink  with the regime? 

How did u find EC in comparison with the Pacitaxel? 

Did u have a choice of surgery? 

How long after finishing Chemo did u have your surgery? 

Did u have Filgrastim injection if so did u have any Side Effects ? 

 

My apologies in advance for the millions of questions and i wish you a speedy recovery.

Big hug 

Love  Daisy xxxx

 

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Re: August 2019 Chemo Starters


Hi Daisy 

 

Sorry you find yourself on here with us all. My diagnosis was also triple negative Iv had 4 cycles of EC that was given Every 3 weeks and then 12 weeks of weekly paclitaxel. Iv just had a mastectomy on Wednesday last week. 
Like you when I first started my Chemo back in August I thought the end seemed so far away. I can honestly say for me it’s gone so fast..Just get through one at a time and try not to think to far ahead. Once I got past half way I started counting down. How have you been with the paclitaxel so far? Any questions about anything please don’t hesitate to ask I remember only to well how I felt at the start of all this.

 

Big hugs 

Lisa xxx

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Re: August 2019 Chemo Starters

Hi lisa and everyone

My names Daisy and im just going through the chemo stage i was diagnosed in Jan with Tnbc 3 nodes involved. Im currently have paclitaxel and carboplatin  on a weekly basis then Changing to Ec for four weeks . Then surgery . Im just wondering how you are all doing. ? Im just struggling at moment to see an end to the chemo ? 

Any advice would be greatly received.  

Thank you 

Love Daisy xxx

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Re: August 2019 Chemo Starters

Hi everyone,

 

Spottycotty - So sorry to hear about your experience during the bone scan.  I can understand how worrying it is, but your team is obviously being very thorough and making sure that you are being fully checked out.  Scans show up all kinds of things, such as previous minor injuries to the bones, so hopefully anything that they have seen will not be of concern.  I will keep my fingers and everything else crossed that it turns out well for you.  Please let us know how it goes, as we will all be thinking of you.

 

Wolvesgirl - What a horrible time you have had: a hospital stay is the last thing you deserve after the chemo and all the other treatment you have been through.  It’s good to hear that they have found out what was causing the pain, and that you are now getting the right treatment and follow-up.  Make sure that you take things easy, and I hope that you are soon fully recovered. 

 

Hollyleaf - It’s good to hear that you are getting your arm movement back, and also that you are feeling more positive and getting rid of the last of the chemo symptoms.  I think it’s definitely true that you are over the worst of the treatment now - as many others on the forum have said, I have found that the chemo is the most challenging, then the surgery, with the radiotherapy much less of an issue.

 

Lisaloo - So pleased to hear that the mastectomy went well, and that you are feeling OK.  It is another big milestone achieved in the treatment journey.  Take it easy, and I hope that you will have a speedy recovery.

 

JulieME - Good to hear about your clear results from the colonoscopy, and also that you have had the portacath removed.  I hope that the eyelash problem improves soon - I had the same issue with a few remaining long eyelashes which drove me mad, but they very soon dropped out, to be followed by a set of full set of short eyelashes which are now almost at normal length. 

 

My news is that I have had my first week of radiotherapy at St James’ in Leeds, and that it has been fine.  The treatment takes only a few minutes each time, and I have not had any skin reactions or other side effects.  I am travelling there by train after work, which is not too bad as it only takes 23 minutes (plus about 10 minutes by bus to the door of the radiotherapy dept).  Luckily the trains are not busy, as I am going in the opposite direction to most commuters.  The only drama I have had is that on Tuesday my treatment was delayed by 40 minutes as a machine had broken down, and when I tried to leave the dept at about 6.35pm, I managed to get stuck between two sets of doors that had locked automatically behind me.  I could not get a phone signal as the corridor was below ground level, so wondered if I would be there all night.  Luckily a cleaner came along after about 15 minutes and released me. When I told the radiography staff about it the next day, they were very apologetic, as they are meant to accompany any patients still there after 6.30pm to the exits, and to let them through the doors with their pass.  Hopefully it won’t happen again!  Other than the radiotherapy, I will have my third post-surgery cycle of herceptin/perjeta infusions next Thursday (cycle 7 of 18 in total), and am getting used to the morning routine of taking the bisphosphonate tablets.  I have to do anything which involves bending - such as pet feeding or taking in the milk - before taking the tablet, then stay upright for an hour, while remembering not to eat/drink for 30 minutes. I am really missing my early morning espresso, but I make one as soon as I get to work and so it is not too bad.  I am still really enjoying being back at work, and so far am not feeling tired (although I know that as the radiotherapy progresses, tiredness is a likely side effect).  As I have 210 hours of accrued leave to take, I guess I may use some of it if I get tired over the next two weeks.

 

Love and hugs to everyone,

 

Blackcat xx

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Re: August 2019 Chemo Starters

Dear Spottycotty,

 

Oh no, so sorry to hear that. The thing is, whatever it might be is so much better that you are looking into it. If it something it’s better investigating than not knowing and feeling the pain/numbness.

 

Throughout my journey, and I am sure it must be the same for most, I have noted so much more any niggles or pain - it’s just made me a lot more aware of little things but at the same time more concerned. I think this is natural though, and cannot be avoided. You all on here have taught me that accepting what we are going through is better than worrying about it.

 

And if nothing else, we are definitely here to listen.

 

Hugs Spottycotty, I hope you find out soon,

Hollyleaf

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Re: August 2019 Chemo Starters

Wolvesgirl 😳 wow..

Sounds like you’ve been having an awful time with it all!! So glad you’re in the mend now but I bet it’s been awful.

Good that you’ve ditched the wig, I had my hair redone the other day, when she took the system off I was amazed at my hair growth to be honest!!!

 

Lisaloo, glad your op went well and you’re reasonably comfortable considering, as you say, that’s another bit done!

 

As for me, I’ve been for a bone scan today, they were just starting the machine up and I stupidly opened my eyes to see the plate cm’s from my face, had a hot flush, freaked out and said I needed to take my jumper off so they to restart the machine!!! Oops!! Ha ha!!!!

deep breaths were required!!

 

Anyway, as the machine slowly went over my body I could see the X-ray image on a screen and I swear I saw a white mark on my spine .... don’t want to over react and I can’t read machines one little bit but it was there.

So they scanned my body, my ribs from each side then she came over and said she needed one last image of my right elbow!! She did that then said I was finished, I asked her why they needed to do that and she muttered that she had seen something, she wasn’t allowed to say anything though but needed another image of the area for the consultant to see 😳 she mentioned that it could just be a fracture but she can’t say 🙄

so now I’m silently panicking and feel a bit down in the dumps that this might not be over for me ...
i ave been having numbness and pain at night in my right hand,waking 4/5 times a night with it and it sometimes goes a bit numb in the day, it feels like a nerve is trapping, so now she’s said that to me I can feel it all the more!!! Haha.

bloody nightmare, so I’m back on the dreaded wait for results,  timescale unknown!!!

 

Anyway, thanks for listening to me ramble on xxxxxxxx 😘

 

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Re: August 2019 Chemo Starters

 

Hi Holly, wolvesgirl and all other ladies. 

So sorry to hear of your past 10 days wolves girl..it sounds awful! Glad to hear your on the mend now! 
Holly sorry to hear you have to have a second surgery, at least you know what to expect this time and hopefully your recovery won’t be to long. 

I had my mastectomy on Wednesday, I stayed in 1 night so got home yesterday at about 1pm. The whole process wasn’t as bad as I thought and the last thing I can remember is the canular being put in and a strange feeling up my arm then nothing until waking up in recovery saying how hungry and thirsty I was! 😂 
I’m feeling fine in myself just sore and uncomfortable.

Been very tired and sleepy today so just listening to my body and resting. So glad this part is over with. Another stage over with! 

Big hugs to everyone

Lisa 

xxx

 

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Re: August 2019 Chemo Starters

Thanks Hollyleaf

 

It was pretty awful tbh, but I am always amazed by the care given by my nursing colleagues in challenging circumstances and it was no different this time. I felt safe and supported especially by one of the acute oncology team who went above and beyond to support me.   The bay I was in was interesting!  A 91 year old who mercilessly manipulated her family and was as sharp as a tack, a lady in end stage respiratory failure who spent most of the outside smoking (!) and a very big lady whose behaviour was, at times, appalling. I just put my headphones in and turned the volume up!  

So pleased everyone is moving on. I have ditched the wig - just couldn’t be bothered with it in hospital. It’s still very short but looks ok. 

thanks for your support

 

WG xxx

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Re: August 2019 Chemo Starters

Dear Wolvesgirl,

 

So sorry, that sounds awful!

You sound so calm in your account of the days, I am sure they must have been so stressful. Sending you warm hugs.

 

 I am feeling more positive today after all the reassuring messages from Spottycotty, JulieMe and the others. I think it’s also because my fingers are no longer painful, my fingernails are half decent and I feel a little more energetic now I am 8 weeks (already!) post chemo. I do hope it’s all going to be easier from now, although of course I haven’t even started radiotherapy!

 

Having said that, there aren’t any signs of hair for me yet, except for some hair on my head which is definitely coming back (not so much on top, more to the sides and mostly white!!). 

 

Please do write if that helps, I cannot imagine how awful that must have been for you!

 

Hugs,

Hollyleaf

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Re: August 2019 Chemo Starters

Hello everyone

 

So sorry to have been a bit quiet for the last 10 days or so - its been a tricky time!  More of that later.  Good to hear all your news - Lisa, how has the surgery gone?  You are three days post op now I think and I hope that you are doing well.  Hollyleaf, sorry that you have to have another op - same happened to me as they were not expecting cancer so had to go back and do the lymph nodes.  Still, at least this time you know what to expect and it will be much easier without the drain.  Blackcat - how has your first week of radiotherapy gone?  Spottycotty - keep your manager at bay - I cannot believe you should be back on the wings just yet.  Having visited nursing staff in the local prison when I was working, I know how tricky your job can be.  Julie - well done on retiring.  It really is great, or at least it was before all this started, and I am sure you will enjoy it.

 

So, my news.  As you know I was struggling with pain and ?gastric irritation possibly due to the Zometa which I had on 05 Feb.  Last Wednesday (10 days ago) I woke early feeling dreadful as normal and took my temperature - 39.8!  Nearly fell out of bed.  Cut a long story short, rang 111 and ended up in ED where they did a chest X Ray that showed that most of my left lung was being compressed by a pleural effusion.  14 hours later I ended up on AMU (not the most restful environment but better than ED) and then went to the Respiratory ward where I stayed for the next week.  On Friday I had 900mls drained from my chest which immediately provided some relief in that I could breathe but caused quite a lot of pain as everything was moving back into place.  That has eased now. The upshot of it all was that I had pneumonia probably picked up because I am still vulnerable from the chemo and the effusion was an inflammatory reaction.  There were an anxious couple of days whilst they checked to make sure there was no sign of spread - had a CT and they sent off samples of the fluid - but I am pleased to say that there is no sign of that.   So on the road to recovery now.  It was suggested that I had done too much during radiotherapy which I accept - maybe zumba not my best idea!  I have a whole list of appointments - I have an echocardiogram in a week as there was fluid around my heart too, next Saturday I have my dexa scan and then my end of treatment appointment with the oncologist in a couple of weeks.  I also have to be followed up by the respiratory team in 4 - 6 weeks.  Just as well I am not working!  So thats my news - sorry its such a long post.  Keep safe everyone, much love xxxx

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Re: August 2019 Chemo Starters

Hi everyone,

 

sorry I’ve been absent, I did a long post the other week but I didn’t realise it didn’t submit properly! Never mind though.

 

ive had a quick read through while I’m watching the kids trampolining and thought I’d check in.

 

sorry to hear you’ve got another op looming Hollyleaf, I find it interesting though, I got my pathology report back which says I had clear margins of less than a mm !! What even is less than a mm?!? I asked the consultant about it and he said that my tumour was small, I’ve had a lumpectomy with clear margins albeit small (!), chemo because the tumour was Aggressive basically saying if it wasn’t triple negative I wouldn’t have had chemo, 15 rads then 5 boosters. He says I’ve been adequately treated and not to worry!!!

I mentioned the rib pain I’ve been experiencing and he’s referred me for a bone scan which is on Friday. He did say that he’s pretty certain it will come back clear though, at least he’s listening to my concerns.

 

Glad we are starting to return to work (or retiring 👏👏) although I’m sorry to hear you’ve been unwell Wolvesgirl.

 

My fingernails are starting to fall off now, I swear I look dead underneath my nail varnish!!! I’m back at work on restricted duties as I’m a Prison Officer, so I’m office based for the time being, my boss asked me the other day when I will be able to take my fitness test though, told him to back off, I pointed out that if I looked as though I’d had cancer (I don’t as I’ve got a hair integration) then he wouldn’t dream of asking me that yet! He looked suitably embarrassed as he should do!

Anyway, take care everyone xx

 

 

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Re: August 2019 Chemo Starters

Dear Julie,

 

Thank you so much for the encouragement. I am just starting to have a better arm movement, so I do hope it heals quickly. The prospect of another month of the ‘army’ bra (!) does not fill me with joy! The nurse said I should keep the dressing, which cannot be wet, for 2 weeks. So no showers again!

 

Argh!

Anyhow, I hope I will heal like you. Meanwhile I hope everyone else is enjoying the weekend.

 

Hugs

Hollyleaf

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Re: August 2019 Chemo Starters

Thanks Hollyleaf, that's very kind of you and you'll be in the same position as me (not retirement but socialising more) before you know it.

 

Just wanted to mention: I had to have a second operation too (they hadn't taken enough healthy tissue from around the tumour the first time).  As your surgeon said, it's a MUCH smaller operation - my surgeon re-opened the existing wound as well - and it healed REALLY quickly (much more so than the first op).  I agree it's daunting to have to go through the process again, but it's better to be sure... and it honestly was very much easier to recover.  I believe it happens in 1 in 5 cases, so we're not alone!  Will be sending positive vibes on the 10th, and you'll also be sure it's the last time you'll have to be there.  Long road, but there IS an end to it!

 

Love Julie xx

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Re: August 2019 Chemo Starters

Dear Lisaloo, JulieMe, Wolvesgirl and all,

 

JulieMe, congratulations on retiring, it must be a nice feeling coming nearly to the end of treatment and having time to socialise. And well done on getting rid of the portocath, I dreaded having to have one of those and managed to avoid it.

 

Lisaloo I really hope your operation goes well. I found the encouraging words and advice (on what to take, but also what to expect), really great. I found having my family around and going out the days before made me calm and relaxed. It totally worked!

 

Sadly the surgeon said I must have a second operation. I was really disappointed on Thursday but I really cannot avoid it and the end result is what matters. He said it’s much smaller, still a general anaesthetic but he will only open part of the wound and I will have no drain. Also, I will go home the same day. Wish me luck, it’s on March 10th.

 

That however also means that radiotherapy will be pushed a month back. I guess it’s more time for my body to recover post chemo.

 

Stay warm this weekend, we have lots of football matches to attend with my children!

 

Love to all,

Hollyleaf

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Re: August 2019 Chemo Starters

Hi all - apologies for going "missing" for a couple of weeks.  I've been really busy!

 

Good luck for next Wednesday, Lisaloo.  I was going to suggest you may prefer to have the mastectomy first and reconstruction later, as that's what I was going to opt for (my surgeon said he could do that, although he does breast surgery AND reconstruction so there wouldn't have been a need to get two surgeons together).  But as it turned out, I only needed a lumpectomy in the end so decision not needed.

 

Sorry to hear about your problems with Zometra, Wolvesgirl.  I'm assuming that's the same as Zoledronic Acid?  I've been having that at 3-monthly intervals at the same time as chemo, so could never tell what was giving me what side effects.  I had my first Zoledronic Acid on its own on Thursday last week, and didn't really experience any noticeable side effects so it sounds as if you've definitely had a reaction.  Such a shame, but perhaps there's something similar that might be better for you?  

 

Like others, I kept my eyebrows and and eyelashes throughout the chemo - only for almost all of them to fall out about 3 weeks after my last treatment!  They've started growing back now, but mascara is a no-no as it really shows the stubby ones against the (probably 5 in total) long ones.  I'm quite tempted to pull the long ones out!  As I was able to have the cold cap throughout chemo I didn't lose all my hair, but it thinned to about 50% of what it was and the 'ice' damaged what I did retain and made it frizzy.  The new growth is now about an inch long, so I've had the existing (longer) bits styled so it doesn't look quite so mad!  All coming through grey, and I think you have to wait 6 months before you can use colour.  I might stick with the grey though, as I quite like it and it will save a lot of faff in the long run!

 

I've been at the hospital this morning for a colonoscopy (something they couldn't identify from my baseline CT scan had to be investigated) which was fine, although the 'Moviprep' - which completely empties your bowel - that I had to take yesterday was anything but pleasant.  I must admit I feel like most areas of me have been violated now!  They gave me the results straight away, and it was great to hear there's nothing to worry about.

 

I turned 60 last weekend and also retired!  So I was back for a leaving do on Wednesday last week - it was lovely to see my workmates but, for me, I want to use my precious time doing things for myself rather than spending it at work.  I'll be keeping in touch with work friends, but only socially in future.

 

I also had my portocath removed from my chest last week - lovely to get rid of that!  My ongoing (until August) 3-weekly Herceptin injections are going into my thighs so I don't really need the portocath any more... although I do wish I'd kept it for the Zoledronic Acid on Thursday.  

 

I start radiotherapy next Monday, and have already been 'marked up' for it.  I think it's going to be the travelling to and from hospital every day that will be more of a problem than the actual radiotherapy (fingers crossed) from what others have said.

 

It feels like I've hardly been away from the two hospitals I have to go to over the last couple of weeks - a bit like all the tests before chemo started.

 

It's great to hear everyone's updates.  Keep up the good work, and do let us know how you get on.  Nearly there...

 

Julie xx

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Re: August 2019 Chemo Starters

 

Hi ladies

 

Just an update from me. So I’m booked in for my mastectomy this Wednesday 4th 😬 had my pre op assessment yesterday. I am so nervous but keep calming myself down with the knowledge that you ladies have already been through this Part and have offered reassuring words. 
Holly was it Thursday you were seeing your surgeon after your surgery? Hope all is ok now with regards to your swelling. 

im still eyebrow and eyelashless but I’m sure Iv got the tiniest of hairs starting to come through.. the hair on my head on the other hand is growing like wild fire... albeit grey and fuzzy 🙄😂 

 

hope everyone is well.. looks like we’re in for yet another storm this weekend!! 

Lisa xxx

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Re: August 2019 Chemo Starters

Dear Wolvesgirl,

 

So sorry to hear that you’ve had a tea bad reaction to Zometa. It sounds really tough. We are going from one challenge to the next but we all have each other, and this is a safe space to vent all our frustrations and ask those questions that none else, except those who have been through it, understand. I really hope you can manage with the help of pain relief and hopefully the nurses next week can help too.

 

 I am so glad that also other people experienced the return of lashes and brows late, I was beginning to wonder! The accumulation of fluid is bothering me a bit, more because I am worried about it than anything else.

 

 I am keeping everything crossed for Thursday, and I will let you know.

 

Hugs to you all,

Hollyleaf

 

 

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Re: August 2019 Chemo Starters

Hello everyone

 

So pleased to hear that all are doing well.  

 

Blackcat - sorry about the flooding, we have had it here in Shrewsbury too - the flood defences mean that its not as bad as it used to be but we have friends in Ironbridge who own a business beside the river which has been badly hit this time.  I wonder how long they will go on with it to be honest.  So pleased you are enjoying being back at work full time - how wonderful!  I am sure you will sail through the radiotherapy as well - its really not too bad.  I am very much looking forward to visiting the Hebrides - we fly from Glasgow to Barra (landing on the beach), pick up a car and then spend a week driving up the chain to end up in Harris and eventually flying back out of Stornaway.  I had a very dear aunt who was from Bute and I did toy with the idea of visiting but we can't do it all.  Next time.....

 

Lisa - it will be good to get a date in the diary for the surgery - another step forward.  Re eyelashes - mine were the same as yours, hung on all through treatment and then fell out.  However .... both lashes and brows have suddenly returned - thicker and darker than before and all in the space of a couple of weeks!  I have to say I am delighted.  I have had my hair cut for the first time too - it looks a lot neater, still a bit too short to go public with but I could do - again its growing well and feels more like its old self rather than the fine wispy stuff that stayed with me through chemo.

 

Hollyleaf - well done re the drain - I am sure the fluid collection will sort itself out - reading other threads on here it seems to be something people experience.  Your appointment with the surgeon will be well timed!

 

As for me..... its been a bad week.  This pain and general unwellness has continued - to cut a long story short the thinking is I have had a severe reaction to the Zometa which has given me gastric reflux, muscle and nerve pain, weakness, shortness of breath and high temperatures.  Today I can say that the pain has reduced - am taking twice daily omeprazole and regular paracetamol - and whilst not entirely gone, I am totally washed out.  I have not driven or been anywhere for a week now, just wandering around the house trying to concentrate on things.  Its very reminiscent of chemo days sadly!  In some ways its worse as it seems to be never ending whereas at least with chemo the side effects tended to follow a pattern.  I have had to cancel a few things as I just can't manage them which is really sad including a trip to London on Friday.  I see the nurses again a week on Thursday but I think its safe to say that Zometa and I are not made for each other.  Guess I will have to run the risk.  

 

Anyway, keep safe everyone, great to hear your news when you have time to post.  Much love xxxxx

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Re: August 2019 Chemo Starters

Dear all,

 

It’s always to hear your news, I have found this thread to be wonderful, supportive and respectful. You are great!

 

I finally had my drain out last week, two weeks post surgery. It was really annoying me ... but... the fluid has been accumulating ever since and I now have a very enlarged area under my armpit. I phoned the hospital and I should monitor it but thankfully I am meeting my surgeon for the check up three weeks post surgery on Thursday. Fingers crossed, I would rather they didn’t need to drain it.

 

Regarding my eyelashes and eyebrows I have literally a handful on each eye. They fell out around the time of my last chemo and haven’t come back yet!! This Friday it will be 7 weeks post chemo and not a single new eyelash, eyebrow or for all that matters body hair anywhere! Only my hair (on my head) is coming back slowly. 

 

On the other hand, my hand nails are looking better and the pink coming through is getting bigger all the time. My hand nails deteriorated over the last two to three sessions - I think I had more than many people here, 8 rather than 6. Having said that my toenails have not been affected at all. I don’t know why - possibly because they are covered hence the UV light can’t get to them?

 

So pleased to hear some of you are back at work and some are planning holidays! I am planning on speaking to my boss as soon as I know the dates for radiotherapy, which should not be long from now.

 

Big hugs to you all,

Hollyleaf

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Re: August 2019 Chemo Starters


Hi Blackcat an everyone else. 


Blackcat it’s lovely to hear that your back to work. Iv been lucky that Iv still been able to do a few hours every week through my treatment. I have put my hours down from full time to 16 for the time being but it’s been my little bit of normal and it does take your mind off what’s going on.
There’s been a change of plan with my surgery, there finding it difficult to get a date any time soon when both my surgeons can be together to do the mastectomy and reconstruction so I’m having a mastectomy first then I’ll have my reconstruction at a later date. I’m seeing the surgeon on Monday to hopefully get a date on that. Just want it over with now. 
I haven’t lost all of my eyelashes all the way through chemo and now 3 weeks post chemo they’ve all decided to fall out! Iv got about 3 lashes on one eye and 6 on another 🙄 I hope they don’t take long to come back! Has anyone else had this happen? 
Hope everyone’s ok

 

Lisa xxx

 

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Re: August 2019 Chemo Starters

Hi to everyone on the thread,

 

I hope that you have all had a good week, and that everyone is surviving the stormy weather.  Here in York we have quite bad flooding in the city centre, as often happens at this time of year, but thankfully the river defences are working well and preventing a repeat of what happened in 2015.

 

Wolvesgirl - I hope that your chest pain is better, and that all goes well when you have the 24-hr ECG.  I understand from my oncologist that chemo can sometimes damage the heart (as can herceptin, which I am on), but that in most cases any damage is not permanent.  It’s so difficult, isn’t - we don’t really have any choice about having the chemo, not can we control the side effects it brings.  I’m interested to hear that you are off to the Outer Hebrides in May, as I am originally an island Scot (my mother came from the Isle of Lewis, and my father the Isle of Bute, where I was born).  

 

Lisaloo - I hope that all is going well with your decision about surgery and reconstruction.  You may well find that your eyebrows and eyelashes start growing again soon - for some reason mine came back very quickly over a period of about a week, and my eyelashes are now getting quite long!

 

Hollyleaf - I hope that by now the drain has gone, and that your recovery is going well.  It is such a relief to when you can move about freely without being connected to tubing.  I’m glad that your hair is coming back too.

 

Spottycotty - I hope that all went well with your final radiotherapy sessions, and that you are not too tired after all the treatments.   It will not be long until you are off to the Maldives!

 

My news is that I have just completed my first full-time week back at work, which I have thoroughly enjoyed.  It has been wonderful not to think about cancer treatments and side effects, and indeed not to think about myself at all, but to focus on what I can do to make life better for other people (I work for a charity supporting people living with dementia).  One part of my role is to run GP-based clinics, and it feels so strange to be on the other side of the desk, and for once not a patient.  I start my radiotherapy on 2 March at St James’ in Leeds, and the hospital has kindly given me slots at 5.30pm so I can leave work a little early and go straight there.  I had my second post-surgery infusion of herceptin/perjeta on Thursday at the end of the working day, and was pleased to find that I didn’t have any side effects afterwards other than a little bit of digestive upset about a couple of hours after the treatment.  By the next morning I was feeling fine and able to go to work.  I will start my bisphosphonate tablets (ibandronic acid) plus Adcal tomorrow, and am hoping that they don’t cause anything drastic in terms of side effects.  It will be a bit of a pantomime in the morning, as I know I that will have to stay upright for a hour after the tablet, take it with a large glass of bottled water, and then not eat anything for 30 minutes - plus remember to take the Adcal exactly four hours later!  I have set my Siri and Alexa to give me reminders so that I hopefully don’t mess it up. 

 

I hope that everyone will have a relaxing evening and a nice day tomorrow.  Much love and hugs to you all.

 

Blackcat xx

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Re: August 2019 Chemo Starters

Sorry, forgot to say that on Monday, when they were checking that the pain was not cardiac, they did a couple of ECGs - one showed a degree of atrial flutter (or so the doctor thought) so I now have to have a 24 hour ECG towards the end of March.  It seems never ending - I hope the chemo hasn't done something to my heart, I will ask the oncology nurse when I see her for my Zometa review in a couple of weeks.   Ho hum!

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Re: August 2019 Chemo Starters

Hi everyone, from a very rainy Shropshire!

 

It sounds like we are all cracking on with this doesn't it?  I think we have been through so much - looking back its hard to understand how tough things were at times (at least for me) but that light at the end of the tunnel is very bright and big now.  

 

Blackcat - fantastic news about going back to work full time. I have to say that if I had still been working I would have worked through radiotherapy - apart from this week with this pain its been very doable.  I know you have to travel (?to Leeds) which complicates it a bit but I am sure you will manage it fine.  You sound like you have a very supportive boss and as you say its a big step on the path back to normal.

 

Lisaloo - I hope you have had time to think through your options - like some of the others I only had lumpectomy so did not have that decision to make but I am sure you will make the right one for you.  Options are a great thing to have but sometimes you feel like you just need someone to tell you what to do!  Reconstructions are, I believe, big operations so you need to be comfortable with whatever you decide.

 

Holly - so glad your recovery has gone well, the drain coming out will be a highlight of next week and I am sure you will find moving around and getting comfy in bed easier without it.  Another step forward.....  Interested to hear that you are getting pink areas on your nails - are they very discoloured from the docetaxol?  Do they hurt and is it just fingernails or toes too?  I have one small black area on one toenail which appeared around the time I was having it but it doesn't hurt at all and the nail is intact.

 

Spottycotty - I am so pleased that your consultant was able to put your mind at ease about the rib pain although I suspect until the scan is done and you know the results you won't be totally convinced.  These guys know what they are talking about - I remember mine saying when he came to see me after the SNB that he was sure that the nodes were clear which is quite a bold statement really but they have so much experience.   You only have the five boosters to go now then?  It isn't that different, the machine is in a different place thats all but the positioning etc is the same.  Slightly less drawing on you with pens.  I got to hate it when they used felt ones as it was so hard to get off!  Still you have the Maldives not that long away - how fabulous.  I have never been there - we went to Barbados a couple of years ago (also in May) for my 60th as I am lucky enough to have family there so have been there a lot since I was a child but it was very special to be somewhere so lovely for a special day.  This May we are off to the Outer Hebrides which doesn't have quite the same ring as the Maldives but I am hoping will be nice.  We are meeting up with some friends there as well.  This time next year we will be in Australia at my stepdaughters wedding which is something to look forward to.

 

So, I finished radiotherapy yesterday, like with chemo I didnt really feel that elated and if there was the option of ringing a bell I would have declined it I think.  My skin remains pink but not sore and I am not worried about it breaking down.  I still have this acute pain in my chest - it came back with a vengeance yesterday/today but I know what it is so am just taking regular analgesia and using a warm pad to soothe it.  This morning it was awful but I forced myself to go to Sainsburys (when don't you have to) which was a good thing as moving around probably does ease it which makes me think its muscular.  As the oncology nurse said, its probably everything catching up with me - I am certainly quite weary as well but getting on with things.  I havent been to the gym or for any decent walks this week.  Anyway, onwards and upwards - next week will be better.  

 

Keep safe this weekend - sounds like another bad one.  Much love xxxxx

 

 

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Re: August 2019 Chemo Starters

Hollyleaf, you are so right by saying we are all starting to move on..

Blackcat..so pleased you are feeling well enough to go back to work full time, it was unimaginable a couple of months ago wasn’t it!!

Wolvesgirl, hope you are feeling better after your blip, sounds awful but you also sound like a strong determined lady so as I say, it’s just a blip ...

lisaloo, I’m sure you’ll come to the right conclusion regarding your surgery, I just had a lumpectomy so i don’t know that much about the options available to be honest. It’s such an individual choice isn’t it.

Im having my 15th rad session today, I’ve  found it ok really, starting to look a bit sunburnt over the treated area but it’s not sore. So 5 more to go next week then I’m done.

I saw the consultant regarding my ribs, my breast care nurse came over to attend the appointment too which was really nice, he had a very hard poke which really hurt!! He has referred me for a bone scan but said he’s pretty sure it will come back clear but just wants to put our minds at rest.... no date for that yet. I’m so pleased they listened and took it seriously but now, when I have my final radiation next week, it won’t feel like it’s over now!! Oh well, better to be safe than sorry.

I am also back at work on restricted duties, I’ve got loads of leave to take too!

We have booked a holiday to the Maldives for May for hubby’s 50th so I’m looking forward to that, I did buy a comprehensive travel insurance before booking though...just in case!!

 

Take care everyone xxxx

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Re: August 2019 Chemo Starters

Lisaloo I had not seen your reply!

 

So pleased your appointment went well. I know what you mean with lots of options. There never is a right or wrong thing to do, just one that works best for you. It’s really good that you are taking the time to think about it. A few days thinking things over and weighing it all up will help. 

 

I am so glad I am not the only one with loads more grey hair than the summer and virtually no eyebrows or eyelashes left (sorry Lisa, that’s a very sad thing to share). However just this week I noted some lovely normal pink colour returning at the base of my nails (hurray). And although there are lots of grey hair, it’s still some hair back!

 

We are all moving on....

Hollyleaf

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Re: August 2019 Chemo Starters

Dear all,

 

So sorry Wolvesgirl that you were in so much pain. It sounds so similar to what happened to me over the Christmas holidays. I had to go to A&E and have all the same scans just to conclude that it was the filgrastin! It was so painful I could not walk for a whole day. I am really glad you are better now.

 

Blackcat how lovely that you can go back to work. My boss has been so understanding and has allowed me to work from home throughout the treatment, as and when I could of course. I have still missed not going in the office though and cannot wait to plan my phased return. 

 

I went to the wound clinic and I still have to have the drain until next Monday. However the nurse was really pleased with how the wound is looking, so much so she took all the dressing off. It’s really itchy now! The exercises are really helping and I cannot wait to get the drain out. Other than that I have not needed any pain relief of any sort. Finger crossed for my surgeon appointment now.

 

Lisaloo you were meeting your surgeon, how did that go? Anyone else, how are you all getting on? Perhaps people have moved onto other threads?

 

Much love,

Hollyleaf

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Re: August 2019 Chemo Starters



Hi Wolvesgirl and everyone else

 

so sorry to hear about your reaction to the Zometa.. it sounds very scary! And Holly glad your op went ok and your home and recovering now. 
Just a little update from me Iv had my appointment with the plastic surgeon today and I’m so undecided with which option to go for with regards to my reconstruction. Its so clever what they can do but it’s just trying to think which ones best for me. There’s no right or wrong way. The surgery just differs and also recovery time afterwards. Iv a lot to think about over the next couple of days as I really need to make a decision soon.


I think your so right about the effects that all this has on our bodies. I think I thought once chemo had stopped.. give it a couple of weeks and I’d be feeling right as rain 😂 we’ve got to remember we’ve had months of this poison being pumped into us and surgery aswell. We need to be kind to our bodies and allow them time to repair themselves.

Holly I’m with you on the body thing to... I was usually at the gym 4 time’s a week and now Iv put on a stone 😫 I always knew I had a lot of grey hairs but always coloured it. Now it’s growing back a fresh I can see just how many greys I have!! It’s a lot 🤦🏽‍♀️ So a stone heavier, very grey hair and very little eyebrows or eyelashes isn’t a look I’m liking at all 🙄 I just keep telling myself it’s something for me to get my teeth into once I’m feeling up to it. 
Hope everyones ok and enjoying the sunny but fresh weather before this storm we’re supposed to get at the weekend! 

big hugs 

Lisa xxx

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Re: August 2019 Chemo Starters

Hi Wolvesgirl and everyone,

 

I hope that everyone is doing OK.  Wolvesgirl - I’m glad to hear that you are now feeling better after the chest pains, which must have been frightening (particularly so early in the morning).  I’m sure that the nurse is right that our systems have been battered by all the treatment, and that it will take a while for us to recover.   Spottycotty - I hope that your ribs are now less painful and that the radiotherapy has been going OK.    Hollyleaf - I hope that your recovering is going well, and that you have got rid of the drain.

 

I am now almost 6 weeks after my mastectomy/ANC, and am doing fine.  I had a physiotherapy “Return to Movement” group workshop with a physiotherapist from our Breast Care Unit last Friday, and she says I have recovered almost 100% mobility and strength in my arm (which is certainly how it feels).   I had a meeting with a radiotherapy specialist oncologist from St James’ in Leeds last Thursday to decide whether or not to have radiotherapy, and again - as with my own oncologist and surgeon - I was told that it was up to me.  She said that if it had been the left side which was affected, they would have advised me not to have radiotherapy due to the slight risk of heart damage outweighing possible benefits, but as it is the right side, they were happy for me to have it if I wished. It will apparently be a “light touch”, with 15 treatments just to the chest wall.  I have decided to have it, so that I know that I have done everything possible to prevent recurrence, and I will have my planning scan in Leeds on Friday.  The radiotherapy itself will probably start in about 4 weeks time.

 

The other appointments I have had recently have all been dental ones - five appointments over the past week or so!  These are to prepare for bisphosphonate treatment, and I have been having some very old fillings removed and replaced  as they had a chip/crack in them, and might be liable to fail in the near future.  As two of the fillings were put in in 1988, I think I have had good value out of them!

 

The other news I have is that I am going back to work full-time next Monday!  I have been building up to this over the past couple of weeks by going in to the office for half a day, or working full days from home.  Being able to work has made me feel so much better, and I am so looking forward to establishing a new normal, and not thinking all the time about cancer treatments and symptoms.  I will still have my three-weekly infusions of herceptin/perjeta until November, but the hospital have scheduled these for the last slot of the day on a Thursday, and work will allow me to work from home on a Friday if necessary, so I am hoping that I will be OK.  My radiotherapy appointments will also be scheduled at the beginning/end of the day so as not to interrupt work too much.  As I have been off work for 7 months and had taken almost no leave for 2019 when I was signed off, I may also use up some of my accrued leave during the radiotherapy if I feel tired or have side effects.  We will see how it goes.  

 

Much love to all on the thread, and I hope that you are all surviving the wild weather!

 

Blackcat xx

 

 

 

 

 

 

 

 

 

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Re: August 2019 Chemo Starters

Hi Hollyleaf and everyone

 

Hope all are OK.  Hollyleaf - how are things now?  Hope you are continuing to recover from your surgery with no complications and that you will soon be rid of your drain.  It must be annoying - I have not experienced that but can imagine.  I know exactly what you mean about the journey changing your body - it certainly has for me and it is hard to come to terms with.  Spottycotty - how is the radiotherapy going? Are your ribs better?  There is someone in the July 2019 group who has experienced that during radiotherapy.

 

My initial smugness over no reaction to the Zometa was rather premature!  I awoke on Monday at 05.00hrs with excruciating (I am not being dramatic) central chest pain.  I was certain I either had a PE or was having a heart attack!  Anyway, roll forward several hours later, bloods, ecg, cxr etc and we all agreed it was the Zometa.  It was awful!  But better than being of cardiac origin.  So, I am back on omeprazole, having paractemol to manage the pain (which is loads better today) and feeling much better in myself.  The oncology nurse said something really interesting, that surgery, chemo and rads is hard but people don't take into account the effect of the steroids which is longer than we think.  I certainly hadn't.  She said that its a long hard road that we have travelled and not to underestimate it's long term effects.  Made me think as I had been very much of the view that it was all back to normal once the chemo had finished.  She also said (in case I am putting any of you off) that side effects with Zometa, if they occur tend to only happen with the first infusion and not going forward.

 

Anyway, it meant that I couldn't attend radiotherapy on Monday so I haven't finished today as planned but have one more session tomorrow.  I managed to breath hold yesterday and today even though it still hurts.  However, have walked the dog and got some of this lovely but cold fresh air which is an improvement.  

 

Take care everyone, much love, xxxx

 

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Re: August 2019 Chemo Starters

Dear Wolvesgirl and all,

 

A friend of mine (who is also a nurse) got me some ear plugs for the hospital stay but I was too tired and a bit lazy to get up and get them overnight. I’d definitely recommend them though as I was in a room of four and the snoring was loud! Thankfully it was only one night. I drank loads of water (was also told off for drinking water before the operation, silly me!) and was sick a couple of times because of the general anaesthetic. 

 

Sleeping with the drain in is annoying but then again it would be similar without because of the wound. Last night I noted before going to bed that I could not feel my upper arm, but when I rang the hospital they said that numbness is normal post surgery. I need to keep the post-surgery bra for 4 weeks and the socks for 2. 

 

I am doing the exercises and plan to go to the palati classes they offer at my local hospital. Let’s hope that the pathology report comes back positive. All in all, it’s another step towards the end of a journey. Today I noted that there’s a small patch of normal pink colour coming through at the base of my nails - finally a sign that the horrible docetaxel is leaving my body!

 

I have received flowers and chocolates from lots of people and I didn’t expect this. The thing is that I feel this journey has changed my body, and I don’t think I can wind the clock back to ‘the me’ I knew at the beginning of August. I think accepting whatever the ‘new’ older-looking me will turn out to be will be the hardest part for me. 

 

In any regard sharing this with you all, who are living this at the same time as I am, is of great help. 

 

Thank you all,

Hollyleaf

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Re: August 2019 Chemo Starters

Hi Hollyleaf

 

Just a note to say well done - it all sounds very positive.  Hope that you continue to recover well and looking forward to an update when you have time! xx

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Re: August 2019 Chemo Starters

Dear all on the thread,

 

 I had my surgery on Wednesday and all went well according to the surgeon. I was calm and only slightly worried when the anaesthetist took a few goes to find my vein but after that I was asleep really quickly. I went in at 9am and the operation finished at 1.30pm. I think I woke up around 2.30pm although I am a bit hazy about the whole day. I was discharged yesterday and had a lovely afternoon with my family. The drain is working well and I have an appointment in a week to remove it but can contact them earlier if it reaches a certain low threshold before then.

 

 I only had pain relief the day of the surgery and yesterday morning and I haven’t really needed it since. I haven’t seen the wound yet because I am not supposed to take the tight bra off. 

 

I just wanted to give a huge thank you to you all. From the smallest advice to the reassurance, it all has helped prepare me for what to expect during my stay in hospital. Having my family around and taking them sightseeing has also helped me relax and think of other stuff.

 

They are off tomorrow so I will write more once they are gone.

 

Much love to you all,

Hollyleaf

 

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Re: August 2019 Chemo Starters

Hi Spottycotty,

 

Thanks - glad I gave you something to smile about!  Honestly I am so pathetic sometimes, my husband says I am getting back to my old "difficult" self - I don't know what he means!  

 

I am so sorry your pain is worse - good that you are seeing the consultant to put your mind at rest.  Perhaps its something to do with the gym - its easy to strain something and for it to take a few days to get worse especially if you are getting more tired.  Anyway, you are seeing the experts which is the main thing.  Try not to worry and have a good weekend!

 

Much love xxx

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Re: August 2019 Chemo Starters

Wolvesgirl, you have just made me proper laugh reading about you being non - compliant! Hahaha!!! Would’ve loved to have seen her face! I know what you mean about everybody looking, I’m past the point of caring now 😂

 

Im sat in the waiting room for number 9 as I type this (so people saw my goofy grin when I read your post!) 

Rib pain today is so much worse than yesterday actually. It’s been feeling bruised when I pressed it but now it hurts if I stretch forward and when my son hugged me this morning, the area has increased too, it goes from the small of my back, up and around to my side. It actually feels similar to when I had a seroma after a surgery. 
anyway, I rang the breast care nurse who initially fobbed me off but an hour later, she rang me back and said that I had been on her mind, so she’s booked me in to see the consultant on Tuesday, bless her.  I think it was when I said I was worried it had spread to my bones when she took more notice !!

 

Hope everyone is feeling ok, I been at the gym this week but it’s starting to catch up with me now as I feel the radiotherapy is making me more tired and my appointments are at the end of the day too 😴😴😴

 

Havr a good weekend, I look forward to reading your updates xx

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Re: August 2019 Chemo Starters

Hi Spottycotty and everyone

 

Hope you are all ok on this glorious winter day.  All fine here - today was day 16 of 20 radiotherapy appointments and the first of the "booster" sessions - targeted at where the cancer was rather than the whole breast.  To be honest not much of a difference in time or experience in terms of the appointment itself which is very tolerable.  I finish next Wednesday which will be great and apparently will see the consultant in 6-8 weeks.  I was asked to see the reviewing radiographer today which was fine but I declined to let her look at my skin which she wasn't very happy about.  Its really the first time in this whole process that I have been less than compliant (!) but I am just sick of stripping off for strangers.  I can't control much of this process but that was one thing I could.  I did explain, nicely I thought,  that I feel more than competent to manage my own skin and that as at least two people a day see it at the moment (with a student its been three radiographers this week) I was confident it was not causing concern.  She didn't appear to believe me about that or the fact that I really have not experienced any side effects particularly but there we are.  I feel a bit guilty about it now!  I am normally the most compliant person ever.  She told me that side effects from radiotherapy can peak about 2 weeks post treatment. So really the time when there might be skin issues is when you have finished treatment anyway and she just said to go to the GP!  My skin is no more pink that it was two weeks ago and I have no discomfort as Spottycotty does in the ribs but I have heard that people do.  I have had the odd twinge in the breast and around the nipple - but that seems to have reduced over the last few days.

 

Apart from that, I had my first Zometa infusion yesterday - it took 30 mins all told to be cannulated and the drugs given which was very doable and so far (fingers well crossed) I feel absolutely fine.  I did take some paracetamol last night and this morning just in case but don't think I really needed to.  They give you chewable calcium tablets as apparently the drug depletes your blood calcium to put it in the bones.  Even I can manage those!  Its been two months today since my last chemo - time really flies and it feels like a dim, unpleasant memory now.  Hair growing well with the horse shampoo (!) - I am looking forward to getting it cut in a couple of weeks.

 

So less about me.....Spottycotty, how is radiotherapy going now?  Has the discomfort decreased, I do hope so.  Are you having 20 sessions too?   Hollyleaf, have been thinking of you and hoping that it all went well and your fears were managed well by the team.  Lisaloo - I will be interested in the outcome of your appointment, I don't know much about the reconstruction process.  Hope that Fridays feel a nice day for you now!   Everyone else, hope that you are continuing along the journey to recovery nicely and beginning to get normality back.  

 

Have a lovely weekend all, much love xxxxx

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Re: August 2019 Chemo Starters

Hi everyone,

 

Well it’s all go on here isn’t it! 
So pleased all the chemo is over and we are preparing for the next stages. 

I, like Wolvesgirl had my op before chemo, just a lumpectomy so there wasnt any drains for me to contend with, I enjoyed my stay in hospital actually, I went in the night before and was first on the list in the morning.
The staff were lovely, (apart from one rogue nurse, but there’s always someone who lets the side down 🤣)

I too think you will be pleasantly surprised by the surgery procedure but I understand your reservations completely.

 

Well, I’m on week 2 of 4 of radiotherapy, it’s not too bad, the worst bit is the awkward appointment times around school and the fact the clinic is running an hour late everyday by the time I get there!!

Other than that, my skin is fine for now although my rib feels bruised.
Wolvesgirl, do you have this too?? How is yours going?  

 

Im also back at work, I’m on restricted duties, so office based and I’m doing half days for a month. 
It’s nice to be well enough to go but I can’t say I’m glad to be back! Ha ha ha. 

Take care everyone xxx

 

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Re: August 2019 Chemo Starters

Hi Lisa,

 

Of course I had forgotten about you! How lovely now chemo is over for you too. I could not feel any joy when chemo finished, but last Friday I was elated that I didn’t need to have another one and my body could just carry on trying to get better. I am now in my fourth week post session and feel I have more strength although my legs are still a little sore.

 

We went out tonight for a lovely dinner and it’s just taking my mind off surgery. I also prepared my bag today as it was suggested and we are going out in the day sightseeing (as my family don’t come here often). It seems to be working!

 

I hope your appointment goes well. I will report as soon as I can.

 

Hugs to you all 

Love,

Hollyleaf

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Re: August 2019 Chemo Starters


Hello ladies 

 

hope everyone’s ok.

Holly I totally get where your coming from with being worked Up about the surgery as I am too! So your totally not being a whimp about it. I’d also like to thank all the others that have already had there’s for your reassuring words. They really have helped me. 
Im have a mastectomy with immediate reconstruction so I have an appointment with the plastic surgeon next week.
Lovely to hear how everyone’s doing.. it was so nice not having to go in to have chemo on Friday. It’s been a week since my last one now 😊

 

hope to hear from you all soon.
Lisa xxx 

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Re: August 2019 Chemo Starters

Dear all on the thread,

 

 I just wanted to say a huge thank you to all of you who have taken time to reply to me Blackcat, Wolvesgirl, JulieMe, I hope I am not forgetting anyone. If I have I am sorry, because I have truly enjoyed reading your posts. In fact, I will ‘take them’ with me and read them while waiting for the operation, I think they will be huge comfort and calm me.

 

 Thankfully my family have been able to join me, it’s so nice to spend time with them and not think of it, it’s calming me a lot.

 

It’s so nice to hear of your progress too, we are all getting closer to the end of treatment, which also brings some form of normality back - something I am sure, we all crave.

 

I will write again as soon as I can, hopefully on Thursday. Thank you again and hugs to all,

 

Hollyleaf

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Re: August 2019 Chemo Starters

Hi everyone

 

Hope all is good with you all.  Hollyleaf, I hope that the responses you have had from Julie and Blackcat have helped - your fear is not irrational - you are about to undergo something that is completely counterintuitive but it will be absolutely fine and this time next week you will be wondering what you were frightened of.  If I am honest I quite like having an anaesthetic!  Weird I know but its a strange but not unpleasant feeling falling asleep so quickly.  I have nursed all my working life and can honestly say that I have never known anyone die under anaesthetic.  I look forward to hearing how its all gone.

 

Blackcat - all sounds like its going very well.  Is Herceptin three weekly?  How fantastic to be thinking about going back to work.  I am thinking about looking for a job a couple of days a week or maybe doing some volunteering once my distance learning course is over in the summer.  Or maybe enrol on a masters......

 

Julie and everyone else - hope everything is going to plan with you too at the different stages of this journey you are on.

 

My news this week:  I am now over half way through the radiotherapy.  Its still going well, no real side effects to speak of.  I am not tired particularly but getting a bit fed up of sitting in the department every day - they are busy and this week have been running late every day.  They are fantastic though but it is just a bit tedious.  It takes much longer travelling and waiting that actually being treated which in itself is very quick.  My skin is a bit pink still but not sore.

 

I have got my first Zoledronic Acid infusion next Wednesday afternoon which I am pleased about.   I have to go and get my bloods done first (echoes of chemo).  So, all being well on the 12th Feb I will finish radiotherapy and will not need anymore treatment until my next Zoledronic Acid in 6 months.  I think I will be having a bone density scan at some point and obviously the odd outpatient appt but hopefully will be able to stay away from the hospital for a while.  Fingers crossed.

 

Something that might amuse you - I have been reading some blogs and as a result am now using a different shampoo and conditioner combination - its called Mane and Tail and its for horses!!!  Apparently very good for thickening hair and promoting growth.  Both of which are the last thing I need when my hair is back to normal but at the moment I am prepared to give it a go.  Its surprisingly nice smelling!  My husband thinks its hilarious.

 

Have a good weekend all - we are doing well!  Much love xxxxx

 

 

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Re: August 2019 Chemo Starters

Hi Hollyleaf,

 

You’re not a wimp at all - it’s normal to feel afraid of having a general anaesthetic, particularly if it’s the first time.  I felt anxious too a few days before my surgery, but on the day of the op I was totally calm as soon as I arrived at the hospital, because the staff were so reassuring and didn’t give me any time at all to worry.  I’m sure it will be the same for you too. The risks of having serious problem from a GA are extremely low.  My hospital gave me a leaflet about having surgery with a link to a website (the Royal College of Anaesthetists) which explained any risks and the care that is taken to avoid them, and I found this really helpful.  The anaesthetist will talk to you before the op and will monitor you throughout to make sure that everything is OK, so you will be well looked after. 

 

The things that helped me most were: 1) reminding myself that I didn’t really have a choice about having the surgery - it wasn’t an elective operation, but one I needed to get rid of the cancer and ultimately save my life.  So as I didn’t have a choice, there was no point worrying about it; 2) reading posts on this forum, and the Macmillan one, from people who had just been through surgery.  This gave me confidence, and I knew I could get through it too; 3) preparing early for the stay in hospital - I bought anything I needed (e.g. front-fastening pyjamas; post-surgery bras, shower wipes) and packed my hospital bag a few days before, and then did activities I enjoyed/went out with friends in the couple of days before so I would be relaxed and not rushing to prepare things at the last minute.

 

A week today it will all be over and you will be recovering (you may even be home - I was discharged at 9.30am on the day after my op, which was a mastectomy/ANC and so more challenging than yours will be).  Once you are home, you will find that you improve quickly and can do more things every day.  I just had paracetamol for pain relief, and only needed to take it for a couple of days.  The drain is a bit of a pain because it restricts how you move around/sleep,  but it is only for a few days.  If you don’t have a V-pillow and small heart-shaped pillow to support your arm, I would recommend getting both, as these have been the two items I have found most helpful (particularly when the drain is in and it is difficult to sleep/sit comfortably).  I am still using both now. 

 

I have been surprised at how quickly I have recovered from the surgery, and I’m sure it will be the  same for you too.  It is a month today since my op, and my scar looks totally healed. I have recovered almost normal mobility in my arm, and am able to do most household tasks with it although I obviously take care not to lift anything heavy.  I was also able to put on clothes which go over my head about 8 days after the surgery.  I am going out and about as normal. 

 

I have an appointment with my GP tomorrow to plan going back to work, although I am still waiting to know if/when I will have radiotherapy (I have an appointment with the radiotherapy oncologist next Thursday).  I had the first of my 14 post-surgery herceptin/perjeta infusions on Monday and this went well with no side effects other than a slight feeling of queasiness for an hour or so after the treatment.  The session took 8 hours because I had an echocardiogram first and had to be observed after the infusions since I have had a break from the drugs, but the next sessions should take only 1.5 hours and the hospital will schedule them in the late afternoon so I can combine them with work.  So I can see the light at the end of the very long treatment tunnel, and am feeling confident that I will be able to return to a more normal life - and to being useful - very soon.  

 

All the very best for the surgery next week - we will all be thinking of you and cheering you on.  

 

Much love to you and to all on the thread.

 

Blackcat xx