February 2019 chemo starters

[lovemama]

Happy Birthday!!!, MBJ, I hope you read this. 

Don't know how to go down this lengthy :smileylol: thread and confirm. I get my treatment in another country and remember you are the first one to welcome me to this forum (thank you) and also your birthday is the same as me in March  :smileyvery-happy:. 

[Nettienoo]

🙌🏻 do you get to ring a bell? X

[lakersgirl]

I am finishing my chemo next week. yay

[daisydi]

Good luck for your bone scan today Jencat.  There is honestly nothing to worry about for the scan but the usual anxiety of waiting for results.  Thinking of you x

[Jencat]

Hi daisydi, thank you so much for your reassuring reply x I can't imagine how it must have felt for you having a scan, but with the knowledge about how they work and being able to see some images. I don't know anything about them and that is bad enough! I'm glad to hear that your scans were all clear. I think I'm just on heightened alert at the moment, so reading too much into everything! The radiologist said lots of images are taken and they can only see a few, but I thought he looked a bit uncomfortable saying it (I'm not sure if he was really, I'd not spoken to him before!) so in my mind he'd seen something. Then the radiologist who'd been with me asked if I'd got an appointment to get the results, I don't remember being asked that before, so again I'm thinking something must have been seen on the scan, but that might be normal procedure to say that! I've had scans before, which have caused me a lot of anxiety waiting for the results, but I think I'm even worse this time! x

[daisydi]

Jencat I was beside myself waiting for results of my CT and bone scans especially as a radiographer and seeing the camera running over my body during the bone scan so I could see what was going on.  I asked to see the images but was told a resounding "no".  All sorts run through your mind and especially as I was used to seeing other people's scans on a daily basis it was pure torture.  Even though I had clear scans my mind was still questioning what I had seen.  Just try to close your mind to nasty thoughts and save all your energy for dealing with the results.  With the CT scan it does take loads of images in slices so takes a while for a radiologist to run through and check everything.  Hope your bone scan goes well next week x

[Jencat]

Thank you Feb'19 ladies for your support and for holding my hand today! Had CT scan, but bone scan not until next Tuesday, which will delay the results another week! Feeling very anxious and imagining the cancer's everywhere, but I suppose that's quite normal when having scans and having to wait for results! xx

[daisydi]

Ive told Jencat we are all holding her hand today for her scan.  She has a big army of us with her in spirit

[Susie B]

Hi

Jencat sends her love to us all. xx

Will post in messenger too.

Susie B xx

[Trixielady]

Thanks Susie

By god it felt really strange getting back in here. 

I'm sitting having a coffee in the Crown Plaza in Newcastle whilst waiting for Scott, it would have been far cheaper for me to pay is bus fares haha never mind I'm actually enjoying people watching xx

[Implausible]

took me a few attempts to remember my password!

I was going to write a long essay with photos etc of how the last year has gone and how I'm getting on now for the Feb 2020 starters, as I know how encouraging I found it while I was in mid chemo, to look at the ladies who were ahead of us and see how well they were recovering 6 or 12 months down the line.

I will still do that when I get the time, but in the meantime, hi to everyone old and new.

[Susie B]

Hi there, as has already been said we're all here to help. We are a large group and between us have probably come across just about everything bc and it's treatment can throw at us. I was diagnosed with triple negative bc so am more than happy to answer any worries or concerns regarding that. xxx

[Nettienoo]

Hi there, yes we are all here to help. Please feel free to post any questions/worries. Xxx

[Edinbird]

Yes as Daisy says we are all about! All the other ladies have finished active treatment but I’m on Cape so if anyone has any questions feel free to ask, I’ve got another three and a half months to go xx

[daisydi]

Just popping back to say that we are all still here but communicating via messenger as we got frustrated with the site keep going down.  Please ask us any questions and we will try to help.

[Jencat]

Susie, just to let you know that I've replied to you about Zoldronic Acid on the TN thread x

[Edinbird]

Hi Deano xx are you able to join the Facebook group? Didn’t want you being missed out.

Debi I didn’t get a seroma so can’t help, I barely drained anything after my clearance and don’t bleed much in general! 😬

[Deano]

Hi Debi

I had a seroma the size of a grapefruit it was huge and I had it drained at least 3 times over 2 weeks. It will keep filling up when draining it and they can last up to 3 months they told me. Mine went down after 3 wks after I went in the hot tub and I think the warm water massaging  my arm helped with the bubbles - I’m not suggesting you do thiis but Keep doing the arm excercise especially stretching your arm. It is horrible but don’t worry it will go and your body will redrain the fluid it just takes time and patience and try not to worry darlin you’ve been through a lot and nearly there- I worried like mad and thought I’d never be right again but you will ❤️❤️

[Susie B]

Hi Debi2

Firstly you may have noticed we haven't posted on here for a while. Don't worry, we haven't disbanded, It's just that we have decided to set up a group through Facebook Messenger so we can  communicate more easily and it will be helpful if we want to arrange meet ups and things. There is a link in one of the posts further down.

In answer to you question I had full ANC back in June and didn't have a drain, my surgeon's preference. After about 7 days I soon had to contend with a tennis ball rather than a golf ball and had drained on day 10 when like you it became too painful. It filled up again and I had it drained again after 7 days. It was fine after that but my bc nurse assured me that if swelled again not to worry, she'd be more than happy to drain it again. Your body will soon learn to adapt without the lymph nodes. There are some excellent videos on YouTube showing you how to do lymphatic massage and there is one produced by Cancer Research UK that demonstrates an exercise routine to help ward off lymphodeama. In the meantime keep doing the arm excercises your hospital has provided you with..

Are you due to have radiotherapy next? I will be starting mine on 21st Oct, 20 session over 4 weeks.

I'll be popping onto this site every now and then so if you have any more questions or just want to chat post here and I'll get back to you. I'll probable pop into the radiotherapy feed aswell.

In the meantime I'll pass your question onto the Feb group and I'm sure they'll tell you about their own experiences. Oh incase you're wondering, there is a large gap between my surgery and rads as I am on a trial (ROSCO) so my treatment was 4 rounds of FEC, lumpectomy and ANC, 4 rounds of TC, which I completed a week ago, then rads.

Take care Susie B xx     

[Debi2]

Hi Everyone

Did anyone on this thread suffer from a seroma after surgery?  If so how long did it take to disappear? and did you have to keep having it drained?  Also how big was it?

I have had my seroma drained twice already and it has filled again.  It is quite large and its under my arm so i can't put my arm down straight.  I know everyone is different but i just wanted to get an idea of how normal this is.

Thanks

Debi

[Rosina]

Morning Ladies,

love the photos Ocean21.

This is to let you know that I am going to unsubscribe from the forum ( as of now) and just stick with the messenger chat group.

What with work etc keeping up with 2 sets of chat/posts is beyond me 🤪

Good to know that Ocean21 is Ony.

So the mystery remains: Perdita who are you?

Have a good day all.

[Ocean21]

Sonia28,

I’m Ony. I did send you an email on here to let you know.

xx

[sonia28]

Ocean, the fruit and juice looks lovely. I would love to tick into it all. 

Have you requested to join the group chat, trying to work out who Ony and Perdita are ?? 

[Susie B]

Hi Ocean21 

Beautiful photos as always☺. Wish our grapes were as plentiful as yours🍇🍇🍇. Going to the press with your fruit seems ideal. Had a quick listen to the story set in Provence and will listen tonight as hubby is away at the moment. Narrated by Stephen Fry, bonus. I'm hooked already🤗🤗. xx

[Nettienoo]

Hi Ocean, that sounds so idyllic being able to take your fruit to be pressed. You’ve certainly got a good stock there. X

[Ocean21]

Last pic was the bottles of juice we got from some apples and pears we took to be pressed.Proper country living antics.

The juice tastes lovely. 

[Ocean21]

[Ocean21]

Bedtime stories.

https://m.youtube.com/watch?v=JcrcXtjRTTE

https://m.youtube.com/watch?v=5mGifCwig8I

[Ocean21]

On the disrupted sleep front. I discovered last night that on YouTube you can get bedtime stories for adults. Sounds a bit weird but they’re designed to send you to sleep. Some have been put up by the people who created the ‘Calm’ app.

SusieB  one of the stories is about going through the south of France so you might like that one.

Also, has  anyone tried melatonin ?Again it’s for disrupted sleep, sometimes travellers use it for jet lag.Over here you you can buy it on amazon France or get it in the shops. I know in the U.K.  it’s prescription only but it might be worth a try.

They've got lots of meditation for getting to sleep on YouTube too so give that a go if your mind us always racing and/or on alert.

Some pics for you. Included some of produce we get from the garden. 

[daisydi]

Think your message did go through Susie x

[Susie B]

Hi everyone 

Found the Feb Warriors messenger group thank you. Sent a message but not sure if it went or not. Will get some lessons from my son at some point 👨‍💻😃😃. He's the expert. Like Daisydi, to a certain extent, I've set the account up under the name I use on here which is actually my real name (Susan). Friends and family know me by my middle name Lesley which I hate. Professionals and formal contacts, docs, dentists, bank staff, solicitors, etc call me Sue or Susan. When I joined this group I decided I would finally use the name Sue/Susie with my new found friends. My mum will not be amused😒😒😕. When I left school/college I was going to go with Sue, then at my first day in the office I came across 3 people I knew so Lesley kinda stuck☹. Made childbirth interesting. Midwife, that's it Sue you're doing really well. Hubby, you're doing brilliantly Les. Confusing or what🤔!? Will explain the reasoning one day. If or when we meet I'll try not to ignore you when you call me Sue.

On the final TC front it's hit me really hard this time especially with the fatigue. And I'm a grass widow for a few days😩☹☹. Chris, my son, is going to have to step up and actually do something for a change. On the weather front it's been pretty wet🌧🌧🌫🌫 but there is a bit of warming sunshine⛅⛅🌤 at the moment.☺☺  xxxx  

[Nettienoo]

Trixielady are you able to join the backup group set up in messenger for when the forum is playing up? X

[Susie B]

Hi Sonia

Somehow managed to set up Facebook account despite chemo brain😩😩 and intense fatigue😪😪😪😪. Thanks for finding me. Need to find the group next perhaps when I'm less tired. Guess that'll be in 3 to 4 weeks the way I'm feeling at the moment. 😩😩😩😩😴😴😪😆😆.

Your friend's hair looks amazing. 

[sonia28]

My friends just posted 9 months hair growth

[sonia28]

Susie, I hope I’ve added the right Susie to the group 😂😂 it looks like you in your photo 😘

lovely to to hear from you Seaside, sounds like you’ve been busy, boat should be ready for next March all being good, as long as hubby does my jobs around the house as well 😂😂😂

[Susie B]

Hi Implausible 

Been meaning to reply since Weds. Oooops. In answer to your question the girl in the boat incident did survive. The charity shop work seems a great idea. At least you'll be doing it because you want to, not because you have to. No pressure. On the baby front I was in the 'If I have one I have one. If I don't I don't' brigade. We, me and hubby, were of the same opinion luckily. When I told my mum how I felt she accused me of having a selfish attitude - she wanted to be a Gran. I don't think she's ever said the same to my unmarried brother.  A meet up in London for a coffee and a hug would be fab. xxx  

[Susie B]

Hi Sonia

If I've done it right my name on messenger is Susan Lesley Bunker. 

xxx

[Seaside Sar]

Hello lovely ladies,

Good to hear from you, Ocean. Well done for getting through the rads. Good grief, you had a lot of sessions! Thank you for the beautiful photos.

Edinbird, I hope the next sessions of rads are easier for you. I totally sympathise on the lack of sleep. It's still affecting me as well. Sounds like you've done everything possible to get some decent sleep but to no avail. Maybe cooler nights will help? Fingers crossed.

Sonia, your hubby's new boat looks awesome. When will you get to try it out? I'll have a go at getting onto the mesenger group. Couldn't get the app to work last time.

How are you feeling after your trip to Cardiff, Marlyn? Did you manage to keep looking attentive even when your mind went a wandering? I find myself doing the nodding and smiling thing quite often and then suddenly thinking, what did they just say? Not good!

How was your soup, Rosina? I made courgette soup last week and it was delicious. Even my hubby enjoyed it and he normally avoids veg if he can.

Daisy, I hope things go smoothly with your Mum's move. As for taking loratidine, I started taking clarytin last week as I was fed up with constant niggly aches, itches, sores, etc. Not sure if it's helping but I am sure to start rattling soon with all the medication I'm taking.

Susie, hope you're enjoying being picc line free. Must be a relief after all this time. 

Well, I'm feeling the effects of a busy weekend. Had 3 lots of visitors on Saturday, followed by ice hockey (they lost 😑) and then a trip to Caister/Norwich yesterday to take daughter back to uni. It was lovely to walk along the beach and we even saw some seals playing in the waves. Made my day 😊

Been over to see a friend this morning and we went for a short walk.

Really need a nap now.

Hope everyone else is having a good day.

Sar xxx

[sonia28]

Edinbird. Glad it all went well, I’m still at the trial appointment still waiting after 50mins to say I’m not doing it 🤪🤪🤪

[sonia28]

Susie, what’s your name on messenger I’ll try and find you 

[Nettienoo]

Just a quick pop in to send Edinbird a cuddle. Xxx

[Susie B]

Hi sonia28 

Love the boat. Just imagining gently bobbing up and down in it in a Greek bay somewhere🛥🏖😎. Sorry but the messenger link hasn't worked for me☹. It's probably me doing something wrong. I have set up a messenger account, just hope I did it right. Seriously thinking of re-opening Facebook account and hope my mum doesn't want to be a friend again. xxx 

[Edinbird]

Thanks Susie xx

All done although they didn’t have my cream ready for me and I had to have a fourth tattoo. It was worse than planning my hand went numb so quickly and my arm ached more too, even though I took painkillers this time. They said I did well but I just felt like crying laid there. They said I’ll have longer sessions for a few days as they have to take pictures as well as do the treatment and then it’s a longer one once a week after that.

Waiting in the trials area now, turns out I don’t need to see the heart trial nurse so I’ll be on the pills for at least another three weeks and that means another blood test then too. Quite fed up to be honest just want to get home. Glad I wasn’t working today.

Hope everyone is ok today xx

[Susie B]

Hi Edinbird 

Thinking of you as you start radiotherapy. I'll be counting the sessions down as each one completed will bring me closer to my starting date, 21st Oct. 

Take care and don't fall asleep on the bus😴🚍 xx 

[daisydi]

Love that boat Sonia.  I'm not taking sleeping pills but then Im not sleeping properly either and am not sure about going down that road.  I think once we have moved mum hopefully my mind will settle down a bit.  I am thinking of starting the Loratadine again as I have read that it can help with general aches and pains and I always have itchy skin from one thing or another.  Edinbird I always have to have my feet out of bed but they are not burning so much since I have had the acupressure treatment.  I spend all night taking the quilt off and then putting it back on and I get up exhausted!

Nice to hear from you Ocean.  Hope your skin starts to heal soon.  I still have a very small bit on the underside of my boob but it happened weeks after rads and I think it was a different bra just irritating the skin and then it all blistered.  Ive just left it alone and it is getting better.

[Edinbird]

The link goes to the right place for me Sonia xx

I tried my prescription sleeping pill on Thursday and it was no better than the over the counter ones 😞 yesterday I was at an event at Maggie’s all day which included exercise, then I walked 6 miles home. Was knackered but couldn’t get comfy so had two codeine one otc pill one Nytol and also used lavender pillow spray and magnesium spray. And still all that didn’t work! Was relaxing and probably dozing on and off for 90 minutes then my big toes started burning! Had to move and get an ibuprofen, putting my feet out of the duvet helped but then I woke again about 2 hours later and was awake at least half an hour, and woke again at some point completely drenched in sweat! So I just don’t know what else to do. I stayed in bed all morning and when I came down at lunchtime I felt really woozy so went back up, probably only slept about 45 minutes though. Feel wobbly now too so going to have a bath, my last for a month and then try and get comfy again. No chance I’m taking any pills tonight as I need to be up at about 6.45 for rads and I’ll feel totally rotten on the bus!

Hope everyone else is having a more enjoyable Sunday xx

[sonia28]

Ocean and all this is the link to the messenger group I hope if I’ve done it right xx https://m.me/join/AbYfhjDB5YS9XKYs

Lovely to hear from you, I know what you mean about the colour after rads, I only had 15, my skin peeled off after, so I’m back to matching colour again, 

Well we’ve had an eventful weekend, hubby bought another boat

Boys and toys, apparently you can never have enough boats🤪🤪 

Are of you ladies taking sleeping tablets?  It’s beginning to take its toll. I think everyone would like me to get a little more sleep and be a little less snappy. 

I am defiantly coming off the aspirin trial, as couldn’t  deal With pain in my hands. That will be fun telling them tomorrow, I’ve also got oncology on Thursday so hoping I get dates for operations and things, I can live in hope. 

I had a friend contact me this weekend, she has just been diagnosed with BC, and as we all know her world has just turned upside down. I’m glad I’m at this end now, not starting the journey. 

Hope everyone has had a good weekend xxx

[Susie B]

Lovely to hear from you Ocean21. Gosh 34 rads blasts, it must have felt as though it would never end. I'll be having 20 starting on 21st Oct. Hope your skin heals soon. The different coloured boobs made me smile😊, sorry. As for my hair it is growing back fairly well and thick. Not sure about the curls though. As for the colour I've had it dyed for years so may go blond with some pink as a fingers up to cancer then go darker again with high-lights. Beautiful photos, I think we've all been missing them. As for changing attitudes or how we look at things now I know I'll have a different outlook on life from now on. Firstly "I'll do that sometime in the future" is already changing to "I'm doing that next", hence my trip to Iceland to see the Northern Lights which I have been putting off for years..

Take care.  xxxxx

[Rosina]

I love figs to eat fresh off the tree ! Thanks for the photos Ocean21 and good to hear from you. Currently cooking a Courgette, Feta and Mint soup.

[Ocean21]

Figs coming through. We’ve had such extremes of weather that this year they seem to be ripening really quickly and the falling off the tresses