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May 2017 chemo starters

Mishy18
Member

Re: May 2017 chemo starters

Hi ladies question for any of you who went straight to rads after chemo on post chemo 3 weeks this Wed and still haven't got my planning appointment yet saw radiotherapy onc 2 weeks on Monday and when I rang to see still no appointments arranged I'm getting worried as I know my onc said rads should be started around 4 weeks after last chemo and the radiotherapy doc said 4 to 6 weeks she's on holiday so I can't speak to her about it
Daffodil54
Member

Re: May 2017 chemo starters

Hello everyone,

Hope you are all doing well today. I had my planning scan on Thursday so am happy to be starting my rads on 27th, so finished in time for trip to Italy for Christmas. I am still taking antibiotics for the bit of infection around mastectomy scar. After losing both my thumb nails, my index finger nails are lifting too. It looks as though the new growth may cause the rest to come off soon too. It is uncomfortable. But on a positive, the hair is growing! 

Pleased you are getting better Treehouse.

Enjoy the weekend. . 

Mai7
Community Champion

Re: May 2017 chemo starters

I've been a walk out to the local coop, bought some bananas and just made a yummy banana bread. Here's the recipe I used for anyone interested. The only thing missing is that you need to add 3/4 of a cup of almond milk (or similar). I also added choc chips this time and left out the bourbon!  Cook at 180degrees for about 35-40mins. (Send a probe in to test if it's cooked inside!)

image.jpeg

Shi
Community Champion
Community Champion

Re: May 2017 chemo starters

Wolfee great news lymphedema appointment been bought forward 😘😘treehouse enjoy your massage, heather thanks for info on moving forward course, noted and will make appointment next year. Wishing everyone lots of love and sparkles and steady recoveries love shi xx
misyangel
Member

Re: May 2017 chemo starters

Treehouse enjoy your massage sounds lovely

 

buddy I am 5 weeks post chemo and my nails are getting worse, a couple are lifting and are painful but it's really strange a couple only went worse this last week 

treehouse
Member

Re: May 2017 chemo starters

Big sis has arrived to give me aromatherapy massage
treehouse
Member

Re: May 2017 chemo starters

I had bilateral mastectomy and implants 5 weeks ago. Gp signed me off til jan 6th.
I am expecting ovaries at some point but want a rest first.
I think doc is happy to sign me off for as long as I need. If I was desperate to go back they would be fine. I really cannot work yet.
Mai7
Community Champion

Re: May 2017 chemo starters

Andi, I'm planning on taking 3weeks off work following surgery with a phased return. Mine was a mx and lymph node clearance on one side, no reconstruction but you will need longer due to tummy factor as well. I think it's up you depending on how you feel. The hospital surgeon should give you a letter to cover at least the first 2 weeks then you see your GP after that. Try and keep your mind occupied up to surgery, I know I found it hard to accept but it's easier once it's done. Xx

Mai7
Community Champion

Re: May 2017 chemo starters

WolfEE, Glad your lymphodema appointment has been brought forward to before Christmas.

what a beautiful morning it is Ladies. Enjoy your weekend. ☀️ 💗💗

tatyana
Member

Re: May 2017 chemo starters

Buddy, my nails were looking a bit iffy before the last docetaxel, got worse after the last, now it's 5 weeks since the last chemo and the nails are very discoloured, like bruising, but not sore anymore. They have receded a bit and I'm keeping them closely trimmed, but there's already a lot of nice clean looking new growth at the base. I'm still painting them cos they look horrible, as if I'd slammed the car door on my fingers!
tatyana
Member

Re: May 2017 chemo starters

Rosie, well done for getting through such demanding surgery and sounding so cheerful!
tatyana
Member

Re: May 2017 chemo starters

Andi, just a tip if you are thinking of getting a compression sleeve, it's Very Important to get it correctly fitted. The wrong one won't help and could possibly make things worse. If you can't get to see your NHS lymphoedema team, try to find someone local, try googling for an MLD (manual lymphatic drainage) practitioner, they will usually be clued up and can measure you properly. I wear a sleeve for flying and strenuous exercise, it was originally fitted by the lymphoedema clinic but it's now on repeat prescription from the GP. I only need to consult them if there's any change, otherwise I just get a new one every year or so.
Andi71
Member

Re: May 2017 chemo starters

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@Andi71 wrote:

Rosie - bless you you must be feeling pretty drowsy after your 13 hours of anaesthetic!  How are you getting on as far as moving around and getting comfy with those drains? Is your tummy pulling\hurting when you go to sit up and sit down?  Have they got you on strong painkillers?   Ooh so many questions, sorry! 

 

It’s good to hear that your planned discharge is for Monday, there’s nothing quite like being in your own bed and your own surroundings.  Have you got your lovely ‘all in one’ ready for wearing once the drains are out?  I took delivery of mine yesterday.  I bought 2 of those and then a couple of those front fastening bras off the same website.  The parcel is still looking at me!  Will open it up this morning 😬

 

I do feel a tad nervous about my op but the thing for me is getting the mastectomy done.  Anything reconstruction wise will be a bonus.  My mindset is as long as the mastectomy is done I’ll be super happy, if the flap takes, well then that’ll be great.  We discussed if my tummy didn’t take and the what to do, so if it doesn’t work I’ll be having an implant too. 

 

How much time  are you having off work for your recovery?  I was told it’ll be between 6-12 weeks. 

 

I hope you you have a good day today and enjoy your visitors and hopefully your getting spoilt!!

 

 

 

 


Here’s the lovely all in one ladies that you get wear post DIEP op - 23 hours a day for 8-12 weeks! 😩

Andi71
Member

Re: May 2017 chemo starters

Rosie - bless you you must be feeling pretty drowsy after your 13 hours of anaesthetic!  How are you getting on as far as moving around and getting comfy with those drains? Is your tummy pulling\hurting when you go to sit up and sit down?  Have they got you on strong painkillers?   Ooh so many questions, sorry! 

 

It’s good to hear that your planned discharge is for Monday, there’s nothing quite like being in your own bed and your own surroundings.  Have you got your lovely ‘all in one’ ready for wearing once the drains are out?  I took delivery of mine yesterday.  I bought 2 of those and then a couple of those front fastening bras off the same website.  The parcel is still looking at me!  Will open it up this morning 😬

 

I do feel a tad nervous about my op but the thing for me is getting the mastectomy done.  Anything reconstruction wise will be a bonus.  My mindset is as long as the mastectomy is done I’ll be super happy, if the flap takes, well then that’ll be great.  We discussed if my tummy didn’t take and the what to do, so if it doesn’t work I’ll be having an implant too. 

 

How much time  are you having off work for your recovery?  I was told it’ll be between 6-12 weeks. 

 

I hope you you have a good day today and enjoy your visitors and hopefully your getting spoilt!!

 

 

 

 

Andi71
Member

Re: May 2017 chemo starters

WolfEE -  great news about your lymphadema appointment being brought forward by over 3 weeks!!! At least once you’ve had it you can enjoy your birthday knowing you’ve got that out the way.

 

 I must admit I was very silly at the beginning of the week.  I had a delivery come as I was pulling out the drive.  Instead of getting the driver to take it up 15 steps up to the house, I told him to put both parcels in my boot and I’d do it later.  Very silly girl! When I came back from doing the food shopping I lifted the first parcel out and could barely carry it (I’d ordered a set of dumbbells for my other half - A Christmas gift - weighing 40K!) I carried the first one up but held them close to my tummy using both arms, but s**t they were heavy! Stupidly went back and did the same with the other one.  Now a few days later I’m finding that I have a dull ache in my left armpit (where I had sentinel node biopsy) ☹️ I think I need to have it looked into.  Will contact my Breast care nurse on 22nd Nov when she’s back from holiday.   I have searched for arm compression sleeves to see if wearing one will help and came across a good site called  Stressnomore.co.uk they have a couple of things that would be good for you should you be advised to get anything.  I’m tempted to get the ‘Solidea Arm Care’ purely because I play golf.  They’re good for mastectomy lymphodema and any exercise post mastectomy.  Worth a look!!

 

I hope your radiology appointment gets sorted and fingers crossed that you slot back into your original timetable 👍🏻 

 

 I’ve to see you back on here 💜 xx

Andi71
Member

Re: May 2017 chemo starters

Heather - I didn’t realise there was another ‘yellow belly’ on the forum 😃 I also originate from Lincolnshire, from a tiny village called Potterhanworth, 6 miles south of town.  Mum still lives in the area but us kids all flew the nest at 17. Whereabouts in Lincolnshire are you?

WolfEE
Member

Re: May 2017 chemo starters

Andi 🔔 congrats on finishing and having a good response from the chemo. Let’s hope the numbness now starts to sort itself out. Xx

Rosie keep resting and healing and fingers crossed a couple of those drains will come out quick time. X

So I had my second planning appointment yesterday for the radiotherapy still not much wiser on what went wrong before?? Now I wait for the phone call that the radiologist has signed it all off and I have a new date. I’m hoping it will be a lot quicker and I may slot back in2 my original time table??

I’ve also had a call my lymphadema appointment has been brought forward from 17th jan and now on my birthday 22nd December so that’s a bit better at least it’s before Xmas.

Mai, no my sister wasn’t given any counceling she has one appointment with a doctor on the waiting list and then surgery !! So fast one appointment I’m sure she missed and appointment because the actual surgery wasn’t explained which was why we were so shocked in the hoapital when the surgery looked so odd we didn’t know what kind of procedure she had even had.
treehouse
Member

Re: May 2017 chemo starters

Thanks heather I will investigate.
Buddy I took nail polish off for surgery ( 5 weeks post Chemo) and they were not pretty. They are painted granite grey again so I can’t see. Has been my signature colour all Chemo.
Raitchr
Member

Re: May 2017 chemo starters

Picture below shows the places which do the Moving Forward course. I wasn't told about it, I saw it a BC magazine called Vita. I registered my interest in the one closest to me, on this website, and then they contact you by email to ask about your treatment and then put you on the next course.

 

I live in Lincolnshire and GP is in the village but my treatment was all in Nottinghamshire.

 

Heather

Raitchr
Member

Re: May 2017 chemo starters

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buddyfan
Member

Re: May 2017 chemo starters

Ladies, when do the nasty se on nails start showing themselves after your last T?
treehouse
Member

Re: May 2017 chemo starters

Glad you are doing well and are in good spirits Rosie. Enjoy the sleep. Do you have the air pressure leg massagers on?
And the lovely surgical stockings?

How did you get on wolfee?
Mai7
Community Champion

Re: May 2017 chemo starters

Lovely to hear from you Rosie, just sleep off that anaesthetic all you need and enjoy the rest. Xx

Shi
Community Champion
Community Champion

Re: May 2017 chemo starters

Rosie, 13 hours on anesthetic... rest and take it steady, that will be great to get out Monday, sending 😘😘💕💕shi xx
Mishy18
Member

Re: May 2017 chemo starters

Rosie glad you are recovering but you will be tired so pleased everything went well for you eventually you rest up and let everyone look after you xxx
Rosie65
Member

Re: May 2017 chemo starters

Hi all had trouble accessing hospital WiFi so just catching up on posts.

Quite a mixed bag going on, we none of us have any certainty but all this really makes you feel you must make the most of each day.

 

I am recovering well although 13 hours of anaesthetic has taken its toll. I’m so tired.

 

Mai glad you had clear margins, but sorry to hear you still have some uncertainty. Just needs attacking with rads and tamoxifen now. I have noticed how many new drugs have been available since I was diagnosed.

 

 Misy angel - glad your op went well. Yes my poor family were very concerned, the surgeons were working so hard to rectify the problem they couldn’t leave me. They really have been marvellous here, it’s very impressive.

 

I have four drains in, one for each boob and two on each side of my tummy. They are hoping to take two out soon as they have minimal fluid in. Hoping for discharge on Monday.

 

Andi - must seem strange to have chemo over but you don’t want to take a chance with neuropathy esp if lump is barely there. So Diep for you next - my situation was very rare, they only have 1% failure rate. Trust me!

Shi
Community Champion
Community Champion

Re: May 2017 chemo starters

Tatyana, post surgery tip get some senikot or something to make you go after op, so you don’t have the backward pine cone experience. Andi great news tumour has shrunk. Mai 😘😘 treehouse 😘😘wolfee 😘😘and 😘😘💕💕to everone love shi xx
tatyana
Member

Re: May 2017 chemo starters

Yes Mishy my fingers feel almost normal now and getting better every day. Took the dark nail polish off today, nails underneath look terrible, black and blue, but I don't seem to be catching them so often, or when I do it doesn't hurt so much! Ends of nails are very thick and crumbly, lifting a bit, but new growth at base looks healthy. So I'm hoping for the best!
Most of the se's do get better, but it can definitely take weeks after the end of chemo. Five wks on, I can suddenly eat yogurt again without it tasting like slime!!
Andi71
Member

Re: May 2017 chemo starters

 Mai - thanks lovey 😃

 

Mishy -  I shall keep my fingers crossed for all of us on the numbness front 🤞🏼🤞🏼🤞🏼... the chemo nurses were great today by saying things like, “Do you want to be able to write with a pen? Do you want to be able to do up a button?” So thinking with my practical hat on, I decided it was the better option to stop and keep those functions whilst I’ve still got them 😃

Mai7
Community Champion

Re: May 2017 chemo starters

Excellent news Andi that your tumour has responded well to chemo and you don't have to have any more! 🔔🔔 enjoy a break from treatment until your s*****y. 

Mishy18
Member

Re: May 2017 chemo starters

Andi I'm really chuffed for you great news that the tumor has almost vanished I know at my last onc meeting before final chemo he asked about numbness but I said it wasn't too bad and wanted my final chemo, fingertips are really quite numb now!!!! But you have such a positive result it was silly to put you at risk of a permanent disability which it can be if it doesn't self repair hopefully mine should start to get better I know Tatanya has noticed a little improvement in the fingers dept and I am still within the 3vwek cycle 😊
treehouse
Member

Re: May 2017 chemo starters

Wolfee are you there?
WolfEE
Member

Re: May 2017 chemo starters

 
Andi71
Member

Re: May 2017 chemo starters

Treehouse - 😂 at your bleep!!!

on my last PTH last week I’d said that  I’d started to get mild numbness and was told to tell them if it got worse. There’s very little chance of moving op date as it’s a DIEP and there are 2 surgeons involved plus Christmas etc.  I’m happy to wait 🐔🐔🐔

Andi71
Member

Re: May 2017 chemo starters

Mishy - I definitely think it’s worth pushing the hospital to help you.  Maybe Macmillan could be another Avenue?! 

Andi71
Member

Re: May 2017 chemo starters

Tatyana - Yes stopping chemo today was a huge shock!!! I’m hoping the neuropathy eases off! I’m sure my ‘lets Crack a bottle open’ line will happen, but today is just about processing it all!!! I’m looking forward to going out and getting my Christmas shopping done Hopefully with no tiredness and I hope the numbness on my tongue will go before Christmas 🙏🏻 ... I’m happy that my op is 7 weeks away, gives me chance to get my head around it 😂

treehouse
Member

Re: May 2017 chemo starters

Not sure why I got bleeped !!!!!!!!
Lol I put P T H C which were my 4 drugs.
Not rude words 😂😂😂😂😂😂
Andi71
Member

Re: May 2017 chemo starters

Treehouse - it’s pretty poor service to be left hanging without advice.

 

I got sent a questionnaire from my authority asking how my diagnosis was handled, scans, nurses, oncology and chemo dept.  What was very evident was the lack of ‘information’ available to me.  It seems to be that other authorities like yours lack the same info.  I’d contact your Breast care nurse, they seem to know the answers to pretty much everything.  I find if you ask you get the information.  If you don’t ask it seems they don’t voluntarily pass it on! Frustrating!

treehouse
Member

Re: May 2017 chemo starters

Andi wow!!!!
Did they not discuss this at your last onc meeting or have the symptoms only just occurred? Glad you have had a positive response. I had **bleep** x6 and tumour disappeared so yes it is bloody powerful stuff.
You must have such mixed emotions and that will take days to process. Any chance they might move surgery forward?
Enjoy a se free Christmas 🎄
X x x x
Well done bell ringer 🛎🎉
tatyana
Member

Re: May 2017 chemo starters

Andi, that's a great idea about getting a copy of the records sent over. I'll talk to the BC nurses, they seem to be the people who know how things really work!

Andi71
Member

Re: May 2017 chemo starters

Mai - we’ll done with the exercises. I’d imagine that it may be scar tissue, it takes a long time to heal.  I know when I had my sentinel node biopsy, the exercises I did had a ‘pulling’ feeling.  Maybe speak with Breast care nurse for advice.

 

I've finished chemo!!!  I’ve written war and peace on the page about my day below 😂

Andi71
Member

Re: May 2017 chemo starters

Tatyana - Bless you it sounds like a real nightmare!!!

 

wouldnt it be great to have a copy of your records sent to your GP, then you can take them to Oxford hospital for them to see clear medical history.

 

might be worth asking your Breast surgeons secretary or oncologists secretary for copies!  They won’t give you the originals because the hospital has to archive them for 30 years would you believe!!

 

A phone call could help you not to have to recall everything and the relay it to Oxford staff if you manage to get a copy. Definitely worth an ask 👍🏻

 

 

Mishy18
Member

Re: May 2017 chemo starters

Oh Andi bet you were shocked I have numbness too have no more chemo so hopefully it may improve bet your glad to hear you didn't have yo have more chemo especially as it has worked so well for you!!! A chemo free Christmas 💖
tatyana
Member

Re: May 2017 chemo starters

Andi, what a shock, it will take you a while to adjust to that! But it's great that your tumour has responded so well to the chemo that it's only the size of a dot, and at least you don't have to drag yourself through any more chemo. They are right to be careful, a friend of mine got neuropathy in her feet and is still not completely back to normal two years later. It just seems to affect some people more than others.

In the circumstances it's a pity you now have to wait so long for your operation. But hey, at least you get to enjoy a chemo-free Christmas!

Andi71
Member

Re: May 2017 chemo starters

WHAT AN AFTERNOON!!!! 

 

So off I toddled to chemo suite for session 5/6 of PTH.

 

Whilst  having my IV Piriton, I’m chatting with my nurse.  I tell her I’m really concerned about the level of numbness I have in my feet, toes, fingers and tip of my tongue.  Within 3 minutes I have my Consultant Oncologist by my side telling me that she too is concerned.  She explains that if I went ahead with today’s session, the likelihood of these symptoms getting worse is high, and that some people suffer with this level of numbness for life.  We chat about  me stopping chemo as I have had such a good response to my tumour (now the size of a dot).  Chemo stays in you system for 8 weeks! Weighing up the pros and cons of both, we decide to not go ahead with further chemo!  🛎🛎🛎🛎🛎🛎🛎🛎🛎🛎🛎🛎🛎🛎🛎🛎🛎🛎🛎🛎🛎

I do feel incredibly happy about not having to do more, but I also feel in no mans land because I wasn’t prepared for this today..... having some mixed emotions and not able to express them properly!

 

So now I just sit and wait for my DIEP operation on the 9th January, and begin Herceptin jabs on 1st Dec!

 

Feeling very sleepy now 😴 after dose of Piriton, which I didn’t really need 😂 

 

 

 

Mishy18
Member

Re: May 2017 chemo starters

Me neither I went to GP who suggested talking therapies which is something in Newcastle but it is not bc related so I don't know if its any use hospital said nothing I rang my local Maggies who run lots of things but don't have a moving forward course
treehouse
Member

Re: May 2017 chemo starters

It’s frustrating. I have not been given any advice on moving forward either and on doing a bit of research my closest is in the next county. My treatment has been excellent but after care with mental impact
non existent.

Wolfee how did appointment go today?
Was your sis offered counselling before her mastectomies?
tatyana
Member

Re: May 2017 chemo starters

Andi, yes I know, it seems ridiculous,doesn't it? You'd think the hospital that treats you would be able to refer you for all kinds of support. But after my first brush with cancer 15 years ago, I got mild lymphoedema, so the Berks hospital gave me the number of the Berkshire lympho service, but when I called them, they said they couldn't take me on, as I didn't live in Berks (to be strictly accurate, at that time I did live in Berks, but my GP was over the border in Oxfordshire!). So I had to go to the GP and get a referral to Oxfordshire lympho service. Which added another several weeks of delay before the treatment could start.  Also, because of the hormone treatments that I was on at that time, the Berks oncologist decided that I needed a scan for osteoporosis. So the Berks hospital wrote to my Oxfordshire gp, who referred me to the Oxford hospital for the scan. All well and good, but none of the records from these Oxfordshire activities ever made it to the Berks hospital. So when I went back there for my diagnosis and treatment second time around, they had records of my original surgery and rads, but nothing about all the subsequent events. How does that make sense?! And I always thought NHS stood for NATIONAL health service! 😉

 

Anyway, I've checked out the info on this site, and found a list of possible courses in Oxford, which I might be able to sign up for. So at least I know they exist!

Andi71
Member

Re: May 2017 chemo starters

Heather - feeling green with envy about being able to do house chores!!! Side effects have left me wiped out! ..... hasn’t stopped me writing a ‘to do list’ though 😉 it’ll be my time soon enough! Glad your having normality creep back in xx

Andi71
Member

Re: May 2017 chemo starters

Tatyana - I can’t believe the hospital is leaving you to fend for yourself as far as moving on courses etc.  It might be worth googling what’s available in Oxfordshire before chatting to your GP. What a pain ☹️