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April 2018 Chemo Starters

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Re: April 2018 Chemo Starters

Hi everyone sitting in the garden on my garden seat it's lovely out here and #lovelyhusky and my cat neo are sitting with me. I'd love to meet you all, looking forward to that. Stopped injections on Saturday and had my port out Monday. So nice not to have it or to inject anymore. Still very achy legs some days I can hardly walk but trying to push through. Been referred to physio on the 16th October. Had my pre op assessment too on Friday last. The op will even things up so that should happen before Xmas. Went to work today lovely lessons but tired. Off tomorrow so short week all in all. Her cep tin Monday too. How's everyone's energy levels? I'm really going slow but planning to start swimming when my port scar heals. Also registered for park run which is every Saturday they say I can walk round. But not up to it yet. At least work tires me out and I am sleeping better. Looking forward to regaining energy now off the blood thinners and moving so far away from chemo. Reading loads at the moment on my 4th book this month so my concentration levels are improving. We want to go away but it's not hot anywhere anymore unless we go way far and that's a bit expensive but looking into it. Have a list of places I want to head to. Well big hugs to everyone have a lovely weekend Gigi x
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Re: April 2018 Chemo Starters

Hi ladies

 

So glad to read your posts after a quiet patch on the board.  Thanks for all the good wishes regarding my radiotherapy.  Last zapping tomorrow  - can’t believe I’m coming out on the other side of treatment.  Radio has been much easier to bear than chemo.  Still got neuropathy & hideous nails but convince myself the pain is fading.  Very tired, though. 

 

Re. survival rates, I tell myself that the tables for this are a model not an exact account for the individual.  Each small percentage adds a bit more hope.  It’s enough for now just to have got through the months of horrible treatment.

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Re: April 2018 Chemo Starters

Yes Christine we still have to plan ahead and believe the future is rosey otherwise life becomes a bit of a drudge.
I’ve been told the same Fiona about the tiredness kicking in after rads, I’m still not sure if I’m having 3 or 4 weeks so that and Christmas could affect when we meet up. Glad you are both keen we will have to work out where everyone is, I’m in Cardiff but willing to travel and yes Christine it will be fun to see if we look as we have imagined! X
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Re: April 2018 Chemo Starters

Thanks Michelle... I'm looking forward to stopping the daily trek but I'm told that the side effects will peak in 10 days after the last radio and then subside again so 3oct for me will be when this all reall start to end!

Meeting would be lovely, count me in

Have a good day, all x
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Re: April 2018 Chemo Starters

Completely agree Michelle that as a person you can be that one even if it shows a 99% survival and i wasn't even looking to know the total percentage. Actually i wish i hadn't seen the overall figure. I was just wanted to know what the benefit was from the added drugs i was being offered as i needed to get my head around the extension of the treatment and side effects. In my case it proved a point but i am not sure as a matter of practice i would have wanted to have know the total figure. I have to believe i will survive 10 years and will continue to believe that unless i am told otherwise. I will still plan for retirement and keep myself fit. Reality is we don't know what will happen to us in the future.

 

Hope you have a bit more energy now.

 

I think it would be fun to meet up. I wonder if we will look like we imagine each other to look?

xxx  

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Re: April 2018 Chemo Starters

Thanks for the info Christine. I spend too much time thinking about survival rates. It’s great if you’re in the 80 or 90% but I guess if you are that one who it doesn’t work for them stats are no help!
Hope the final week of rads goes well for you both Dorabel and Fiona.
My rads will finish at the beginning of November. If anyone is keen perhaps we could arrange to meet up at the end of November? X
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Re: April 2018 Chemo Starters

Hi everyone

I am sure that will be a relief to get the port out. I felt so much better to have mine gone and even better news that you will be able to stop the blood thinners. I only had two weeks of that and my legs were covered in bruises so i have a small idea of what you went through.

 

The website for the 10 years survival i think was a one available to doctors only and i didn't see the name of it. she did say it was nhs i was surprised at the figures she gave me after entering my specific details. the majority of the survivial in my case was the surgery which amounted to over 60% and then a further 10% for chemo and 10% for letrozole. My tumour was alos very eostrogen positive but i have no figures. There was a few other things too and it took into account death through other unrelated issues. I would think most oncologists could give you figures that relate to you.

 

I had problems with the first injected herceptin but the following ones seem to have been less so. I do have aches in joints and muscles for the first 48 hours post injestion but these eased off. I still have neuropathy on my feet which also gets worse a few days after each injection then lessens until the next one.

 

Would love to get away at some point but i am not allowed to fly for a few months post surgery and not really up to it yet. would like to plan something at some point though to forget about this summer.

 

All the best for your last week of radiotherapy Fiona and Dorabel. We all just need to listen to out bodies at not push things too far too soon.

 

xxx

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Re: April 2018 Chemo Starters

Forgot to say Congrats on the port coming out soon Gygi!! 🎉🎉
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Re: April 2018 Chemo Starters

Thanks Gygi, I know what you mean however in my case I don’t think anything has been reassessed. It has been decided on due to my original oestrogen score or 5/8. I will give Tamoxifen a go. The nurse has said to see how it goes for 6weeks so that is what I’m going to do.
Sorry to hear you have been suffering Fiona. I still have numb toes from chemo, hopefully it will fade eventually. Is the arthritis thought to be caused by chemo or an existing complaint made worse? Sounds painful, I hope the new consultant can help.
I am just returning from a short break in San Sebastián. It has been absolutely wonderful to get away from everything. It’s just a shame I have to go back to rads planning and a heart scan! Also both daughters go off to uni this weekend so the house is going to be very quiet. 😢 x
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Re: April 2018 Chemo Starters

Hey ladies.... It is really lovely to read everyone moving on and getting on well after chemo. Michelle, amazing result for you, I'm so delighted for you.
I had a really strange experience of being absolutely floored for 4 weeks after I finished chemo early because of the neuropathy. My body just seemed to explode with strange and unusual side effects but I'm pleased that they have, for the most part, started to fade. I have been left with neuropathy on my hand and feet and now, what my oncologist seems to think is the symptoms of rheumatoid arthritis in my hands feet and knees but I'm being referred to a new consultant for review.
I'm on week 3, the final week of radio, and, touch wood, it's been very uneventful.. Even the fatigue just feels like tiredness after the chemo! Ive been given double base gel/cream to use and for me it's been excellent. I apply 3 times a day, in the morning before radio, and then in then in the afternoon and before bed... So far so good!
Next stop for me is starting tamoxifen and possibly zoladex but I'm resisting those monthly injections as I think it's too much but will see.. The oncologist says there's room for discussion!

Sending lots of good thoughts to all.. I'm with the rest of you.. I didn't want to join a new group.. I like this one! Xx
Member

Re: April 2018 Chemo Starters

Hey everyone, port is coming out Monday!!!! Less than a week of injecting blood thinners left. So happy!
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Re: April 2018 Chemo Starters

Hi Michelle I think that's hard thinking you have an "end" date for treatment and then it goes on. I felt that way about chemo and I keep asking them to make sure I'm informed and no surprises. But I also think they adjust our treatment as they get to know our particular cancer more maybe and there is no plan to ambush us with new drugs just we are constantly reassessed. Maybe? First herceptin in my leg went ok. I've been having a lot of pain in my legs and am referred to physio but that's not till mid October. Working seems to be helping, as I couldn't sleep before and I'm so tired now I sleep much better. My legs are full of bruises as I'm still injecting the blood thinners. As soon as the port comes out that stops. Will ring today as day off work I have different days off depending on the week! Doc says it is aftermath of chemo. I hope it goes away. Feeling like my energy levels are on the up. Hope you are all ok take care Gigi x
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Re: April 2018 Chemo Starters

Hello everyone!
It sounds like you are doing well Christine although it is a slow recovery which is unsurprising for such a big op. I’m really interested in the website for 10 survival rates for each treatment that your onc showed you do you have the address? My onc has suggested I go on Tamoxifen after I finish rads. I was upset initially as this was unexpected, my oestrogen score was 5/8 so weak apparently. I’m sldo having herceptin until May and in my head had thought it was all over then!
Dorabel how have you found rads? Just one week to go now? Have you found it very tiring? Will that be you done?
Gygi, good to hear all is going well with you. I expect you are enjoying being back at work. How are the herceptin in the leg going? The first one I had gave me a dead leg for a couple of days but the rest have been fine! Good luck for your pre op assessment.
I am recovering well from my op. My boobs are a similar size just slightly smaller on the operated side and an indent on it. If it stays like this I probably won’t have any evening up however I have been told that rads might effect it more so I’ll see. Chemo seems like a distant memory now doesn’t it? Has anyone heard form Fiona?
Glad everyone is feeling well and getting through this. Love to all x
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Re: April 2018 Chemo Starters

Hi Christine hi Dorabel and everyone, hope you all had as lovely a weekend as I did.
Regarding belly button Christine they moved mine too and it looks like my belly button. Don't know how they did it! No scars it was just very red at the start and I had to keep cleaning it. Do you have a nurse you could ring to ask about it? That's what I did after my op. Also sounds like they are listening to you re the medication I'm on herceptin (leg injection now and blood thinners too.) Will stop the thinners as soon as my port comes out but waiting to hear when that is. I have different days off depending on the week and I'm off tomorrow so will try to ring and ask. Pre op assessment on Friday and my op (for equality of distribution lol) will be in the next few months. Not joining any other thread I like it here with you guys x
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Re: April 2018 Chemo Starters

Hi Christine

 

Good to know how things are going for you.  I feel the same about this board.  Didnt feel quite the same about the September radiotherapy forum even though I’m now 2/3 of the way through radiotherapy..

 

Hope all goes well after your surgery.  Still early days.

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Re: April 2018 Chemo Starters

Hi everyone. Thought i would put a quick update on here as i am now post surgery but feel more ofa connection to the ladies on the chemo thread.

 

Had an appointment with the oncologist this week and asked about the benefits of letrozole and she went through an nhs website and showed me 10 year survival rates for all the treatments. It put everything in perspective and i now know in my situation that i have an addtional survival rate of 9% by taking it. I was surprised at this but realise i need to take it and i am happier now about it. I dod need the infurisons to reduce the chance of bone thinning but they have agreed it can done through my foot as neither arm can be used. It has helped me worry less. Blood test taken to check hormone levels to see if i need ovarian suppression or not but as i had some spotting last week i am predicting estrogen will still be being produced by my ovaries. Additonal hospital visits will be annoying but not much i can do. Herceptin is every 3 weeks and suppression every 4.

 

Anyway i am recovering from surgery but i am writting a list of questions for the surgeon next week. One is that i don't understand what he did to my belly button. I was expectiong a scar around it as it was repositioned after the DIEP but i don't have one. The belly button is a strange V shape and nothing like my old one even though i thought it was still my old one but moved. What did they do to yours Gygi?

 

Getting out when i can but still severely restricted as i am not allowed to do much for the first 6 weeks. Only a week and a bit to go to reach that so am hoping i can do some gentel gym work soon.

 

Hope you are all moving on and feeling recovered from chemo.

 

xxx 

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Re: April 2018 Chemo Starters

Hi everyone hope all is going well for you. Michelle hope your appointment goes well today. I'm back at work and enjoying it although not up to much else! Seen the oncologist and that went well and had my herceptin in my leg for the first time. Tomorrow is my day off and I have a heart scan. Very achy legs but working through the pain. Just finished a book so will pop into the library to find a new one tomorrow. That's all from me. Take care Gigi x
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Re: April 2018 Chemo Starters

I was trying to edit out a typo so the problem is probably my doing.  Sorry to have rattled the system. 😔

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Re: April 2018 Chemo Starters

Yes I had an email saying Dorabel had posted but I couldn’t access it!
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Re: April 2018 Chemo Starters

Anyone else having problems with this website and access to this thread? I had an email saying Dorabel had posted but link says page not found. when i access the thread via the monthly forums there are no new posts. mabe if i post the other entry will return.  

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Re: April 2018 Chemo Starters

Thanks for this, Christine.  Really appreciate having this information, especially as you are rcovering from surgery.  I hope the last drain is gone or, at least, not oozing any more.

 

Letrazole is something I’ll be having to strip out the last oestrogen.  Feel my menopause is on an endless loop: first time when I had a total hysterectomy; then when I tried to stop hrt; then when I stopped again after cancer diagnosis and now to be helped along by pills. 😖

 

Chemo has made me frightened of any new treatment, so I think I’m fussing about radiotherapy for no good reason.  It’s helps to be reassured that even the tiredness is probably nothing much after chemo fatigue.  I’ve been feeling miffed at the whole cancer treatment and how long it has taken and this cheers me up since it’s only happened when I’m far enough away from the last chemo session to have the energy to feel this way.  While I was going through it, just getting on with it was as much as I could do.  Thanks for the tip about Aveeno cream, Michelle.  I use it as a moisturiser anyway and I’m glad it will be fine after rads.

 

I hope everyone on this thread is moving on after months of chemo.  I won’t miss it!

 

 

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Re: April 2018 Chemo Starters

I know techniques and equipment have changed over the years since i had 6 weeks of radiotherapy but i would say i found the tiredness not to be of any significance. once you have been through the tiredness of chemo the rads are nothing. I was advised to use pure aloe vera only on my skin at that point but that was before current creams were on the market. I am sure they will give you advise on that. I didn't have any major skin problems with it but I know some people do.

 

I had a plan going forward of letrozole tablets but i don't have the start date yet but this was on the assumption that i would be post menopause as i had all the signs that i was very close to the menopause pre chemo but my body wont give up and i think my periods are starting again. At 54 i am amazed my ovaries wont give up. Worried now that my ovaries may need to be removed as I have heart risks from zoladex as i am on another drug that has similar side effects of heart problems. I will wait and see what the oncologist says on the 11th and ask for reasons as to what the benefits are. In my head, if i have had mastectomies on both sides and so have less than 1 % breast tissue remaining, why do i need drugs to stop more breast cancer? Surely any risk is minimal but i am sure she will have a reason why i need it. Anyone else been in this position? Really not keen on more surgery as well as the planned blancing on the reconstruction either.

 

   

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Re: April 2018 Chemo Starters

Thanks everyone for your congrats on my results.

Sally it must be good to see the end in sight, you must be mighty relieved! You’ve been given a date for surgery too which must be nice. I found out about a week before mine! I know what you mean about not wanting questions answered now though, you are still in chemo mode. I find it useful to write down questions in my cancer book as and when I think of them because sometimes things just pop into my head and I forget when I see whichever specialist it concerns. Hope the final chemo goes well and is uneventful for you.
Dorabel I’m so pleased to hear you have squeezed a holiday in, although you are exhausted I bet it did you the world of good. I also have neuropathy in my toes, I only really notice it when I am in bed. Hopefully it will fade. Good luck with your radiotherapy next week. I’ve heard Aveeno cream is good to rub on afterwards to stop it from becoming sore. I’m interested to know how you find it
Dorabel, I start it in October ish, I don’t have an exact date yet. I hope it doesn’t tire you out completely. Xx
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Re: April 2018 Chemo Starters

Look forward to reading you on the new thread.

Thanks

 

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Re: April 2018 Chemo Starters

This is wonderful news, Michelle.  Must be such a relief!  Horrible chemo worth it.  Just.

 

Like you, Gygi, I have neuropathy in my fingertips (& toes).  I’ll be so glad to wake up one morning without feeling as though my hands are holding nettles.  I’m  sure swimming will be helpful to you in your recovery.  I swam a bit on holiday and felt better for it, even though I got tired very quickly.

 

Glad you are feeling a bit better, day by day, Christine.  Surgery is a huge assault on the body but it sounds as though you are healing well.

 

Last chemo is a big landmark, Sally.  I hope it all goes to plan & the side effects aren’t too bad.

 

Came home from holiday today & was exhausted.  Thought that if I’m this tired & the main effect of radiotherapy is tiredness I’ll be comatose after the first treatment on Monday.  Still, it beats turning up for chemo.

 

 

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Re: April 2018 Chemo Starters

Sally65 I guess you will be on the oct surgery thread with me. I finish chemo on the 5th and am on the May chemo thread mostly.x
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Re: April 2018 Chemo Starters

Well the end of part one is here......ish. I have my last chemo on the 10 September. ( FecT 8)

And a date for the surgery. 10 October.

I met my surgeon  today, so please as she seems really nice.  I think I may have many questions but at the moment don't want any answers, .

SallyWoman Embarassed

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Re: April 2018 Chemo Starters

Great news Michelle. We all wonder if everything was necessary when we get results like yours. It did cross my mind that maybe my mastectomy was not necessary but mentally i think i needed it to stop the possibility of a 4th breast cancer. I couldnt cope with yet another diagnosis.

Actualy made it to the local hospital on the bus this morning for herceptin injection. It was quiet due to school holidays so made it there and back with few problems. It was nice to get a bit of independence back. Sun was shining and world felt like a good place. Hopefully progress will continue for us all.

Hope work goes well next week gygi. After the first day i imagine things will return to normal and the summer can be forgotten.
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Re: April 2018 Chemo Starters

Yeah Michelle whoop whoop! How cool is that! So pleased to hear that. Xxx
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Re: April 2018 Chemo Starters

Thanks Jencat, appreciate that. Hope you are keeping well. Good luck with work next week xx
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Re: April 2018 Chemo Starters

Michelle, just read your good news, I'm so pleased for you xx

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Re: April 2018 Chemo Starters

It’s good to hear life is moving on for everyone.

Gygi I’ve just re read your post when I first read fod (finalchemodate) I thought it was a type of medication 😂 I use my phone and the writing is so small! That’s my excuse anyway!! I’ve heard a couple of people say their hair has come back white or with a Mallin streak. I think it does return to normal. I can understand why you don’t want everyone asking about summer. We have certainly had an unusual summer, hopefully out first and last like this! At least work will be a distraction from all of this especially as you obviously enjoy your job.
Dorabel it’s great to hear you cheering your hair on! I think once it gets past the first cm or 2 the frazzled ness will disappear.
Christine well done on changing this dressings I’m glad recovery is slowly but surely happening.

My surgeon rangbyesterday with the pathology report. It was completely clear, no cancer in the lumps or lymphs! So even though the chemo was hideous it worked. Although I do wonder if I needed to 2 FEC. Could I have just had 4 Docetaxol with Perjeta and Herceptin for the same result? I will never know but it will be interesting to follow how future treatments are given.
Radiotherapy and then I’m done! (Apart from the herceptin injection!)
X
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Re: April 2018 Chemo Starters

Hi everyone. Glad to see life is getting more back to normal for everyone as the chemo effects recede.

gygi, i hated the injections and got quite down towards the end, dreading do it. so glad to have finished those and do feel for you. we do what we have to do but don't have to like it. Hope you can stop soon. i have so many bruises on my thighs i am wondering if a clear area will be found for herceptin jab on friday.

 

I had to change the tape dressings over my scars this morning and hated the idea but luckily it all went well. i was told to take the tape of in the shower and give the area a wash with perfume free soap before reapplying. i took ages easing the tape off but all looked ok except for the area where the last drain was which is still oozing slightly. New tape put on is a bit more patchwork but does what it needs to do. Belly button still not healing but i have no feeling so at least no pain. plan a short walk alone this morning. progressing each day but very slowly.

 

Michelle all the best for the 13th. Hope that will be the end of the major treatment. 

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Re: April 2018 Chemo Starters

Hi guys hope you are feeling ok today. Thanks Michelle I'm feeling a lot better now. Pottering around, legs are very achy (herceptin side effects I think) so I can't always sleep well. Taking stuff to try to alleviate it. Hopefully as I get used to herceptin more it will fade.
My hair is thickening up but coming back white! Lol I start work Monday (inset) Tues I'm off & also seeing the oncologist. I'm not looking forward to the first few days of "how was your summer?" It was what it was .... I have slight neuropathy in my fingers of my right hand pins and needles but also hoping that will fade as I move further away from fcd (finalchemodate) Dorabel glad you enjoyed your hols X Michelle I'm going to start swimming mid September. Hope your recovery is going well Fiona. Christine I think you have finished your blood thinners! I'm envious I still have to inject every night. Take care Gigi x
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Re: April 2018 Chemo Starters

So glad you are recovering well from surgery, Michelle.  The exercises will help with straightening your arm, it just takes a while.

 

Docetaxel seems to be cumulative in its side effects, which could be why the awful taste in my mouth is gone while yours is still there.  I had only 3 doses.  My nails are in a bad state & my fingers still hurt.  However, I’ve been on holiday & that was the best thing I could have done.  I’m wearing a wig most of the time as my hair is still only a faint fuzz about 1cm long.  The ends are frazzled, probably because the first growth was so damaged by the chemo.  Just the fact that it is growing at all cheers me up.

 

I hope you get good news on the 13th.  Fingers crossed for then.  xx

 

 

 

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Re: April 2018 Chemo Starters

Hi I thought I’d check in to see how everyone is doing?
Christine how is recovery now the drains are all out? Hopefully you are finding things a little easier.
Gygi how is your recovery from chemo? Has the fatigue finally let up now? You must be going back to school soon, how do you feel about that? Are you having radiotherapy or is that it for now apart from herceptin?
Dorabel hiwnis that final cycle going? I hope the se’s have been minimal, you must be almost finished. My hair has finally stopped falling out now and has been growing back well, although my scalp is still visible in parts. I know I said the mouth taste had gone but unfortunately it hasn’t! Some days are worse than others and it’s worse in the evening but it hasn’t quite disappeared, although I did have 4 cycles of Docetaxol so maybe it’s taking a bit longer. At least we will both have a few weeks break before starting rads.
Fiona how are you doing since finishing chemo? Have all of the SE’s gone now? How are your aches? Are you done with treatment now? I hope you are back to creating your pottery and feeling well.
I am 12 days post op and everything is going in the right direction. Drains and clips out, dressings off. I’m doing my exercises but can’t straigthen my right arm properly yet. I’ll keep trying. I’ve heard swimming is good for the tightness and numbness I will try that after I have seen the surgeon. My next appointment is on 13th, I will get the results then so here’s hoping the chemo killed it all!

Happy recovery to all xx
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Re: April 2018 Chemo Starters

Sounds as though there’s still confusion at the hospital, Christine.  It’s good that you got some reassurance about the pain.  If it’s any help, I had nerve pain down my arm after lymph nodes were removed.  That was at the beginning of February.  The pain, along with the tingling and numbness has gradually faded and is almost gone now.  It has taken ages but I’m very glad it’s happened.

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Re: April 2018 Chemo Starters

The appointment that was booked should have been a follow up with the consultant but not sure what happened as when we got there it was a dressing change appointment (I already had one booked the following day which i had to cancel). the nurse was very reassuring and said it all looked healthy and was probably nerve and muscle pain. It does still hurt quite a lot and yesterday i sneezed and actually screamed with the pain that shot through my breast. Hopefully it will all die down soon.

 

I am using a blood thinner (tinzaparin) that makes me very itchy so I am not really sleeping that well. Using one a day allergy tablets i bought over the counter but i am needing to take a second one in the middle of the night or i will scratch my skin off. Anyone else had to do this or had this problem? Only 2 more doses to inject so hoepfully all will clear up after that. 

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Re: April 2018 Chemo Starters

Hi Christine how are you today? Has the pain subsided? Hope you are able to sleep ok. Thinking of you Gigi x
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Re: April 2018 Chemo Starters

Received a call from the hospital today as a follow up to my complaint and she was very appologetic. I do feel they have taken it to heart and agree i was failed on monday and left alone when suport should have been available.

 

Now the drain is out it is a lot easier to do things so i am moving around more. i did move strangely last night to get out of a chair when a sharp pain went through my right breast. Seemed to be when i put weight on one hand/arm. it happened again tryint to get out of bed this morning so phoned the hotline to make sure it was ok. They don't think there is a problem as there is no sign of blood or swelling. I have an appointment anyway tomorrow so will check this is ok. Feels a bit tender on the top part of the breast. Can't find anything online that mentions this and it is so difficult to know what is ok and what needs attention. i feel like i panic about everything. Assume i will relax a bit once i get used to what is what.

 

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Re: April 2018 Chemo Starters

Oh this is good news, Christine.  I hope the inflammation goes now that the drain is gone.  After the awful time you had, this must be a relief.  It’s not right that you had such a runaround, and at a time of such acute vulnerability.  Now that the surgery is done, things will, I hope, get better.

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Re: April 2018 Chemo Starters

That is really good news Christine. I hope the rest of recovery is smooth for you x
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Re: April 2018 Chemo Starters

Yeah! Good to hear. Hope you rest well tonight x
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Re: April 2018 Chemo Starters

well drain out as apparently the body can start producing additional fluid because the drain is there so the fact it went up is an indicator is had to come out now. The site is inflamed but not infected so all good. So glad it is gone. 

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Re: April 2018 Chemo Starters

Hi Christine, hope it comes out today and everything is okay. Good luck for this afternoon and wishing you an easy journey to the hospital. Thinking of you x
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Re: April 2018 Chemo Starters

Finally got to chat to some one who contacted the consultant and the drain is coming out this afternoon. I think there are concerns about it. Volume last night double the night before and seems the liquid is very red. Need to get to the hospital (one that does have parking thank god) by 2 and will see what happens after that.

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Re: April 2018 Chemo Starters

also the problem in researching online is that there are so many different sorts of drains. Mine is a small plastic sphere (under vacuum i assume) that is connected to a bag. Once a day i reverse the clips top and bottom so the contents can be squeezed out and into the bag to measure before putting the clips back in palce and replacing the bag with a new clean one. I don't have a big bottle  

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Re: April 2018 Chemo Starters

Thanks everyone. Feeling a bit more up beat today and determined to get answers. I will check out that download Gygi. Guys seem to have better info than the Marsden on there website. When i had my chemo port fitted Guys had really good info that i couldn't find elsewhere.

 

I did call the hotline again this morning just wanting the answer to the basic question how do i get new bags. The girl seemed to be the sort to get things moving and asked a number of questions no one seemed bothered with yesterday. It feels like she will get me answers but time will tell. The problem with living in a town with a satellite chemo unit of a major hospital is that the main parts of the hospital are some distance away and not easy to travel to with DIEP surgery. My husband is working from home this week but has needed to do so much for me I don't like to have to ask him to transport me to unnecessary places.

ktk
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Re: April 2018 Chemo Starters

Hi Christine, hope you have a better day today. When I had my drain the Community nurse came and removed it st home. They gave me a yellow toxic waste bag and I had to arrange for the council to come and collect it. I’m sure human body waste does not belong in the general waste, but nappies go in there so maybe it is ok! Kxx
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Re: April 2018 Chemo Starters

Hi Christine
hope it get resolved today hopefully by the hospital's initiative or as you say the local hospital. You shouldn't have to be ringing around and trying to sort this yourself. Guys have a booklet I found quite helpful if you haven't got one already it is download able and called going home with a drain. Thinking of you x