Member
Posts: 291
Registered: ‎15-01-2017

Re: December 2016 Starters

Sara - thanks for that great upbeat post. I'm impressed at your running. I'm seeing my plastic surgeon tomorrow so will find out when I can start to exercise again - though can't imagine it at the moment with the new boob!

 

I'm not managing late eves yet - daytimes are all I can manage at the moment, but it's reassuring to see others who are back out partying!

 

Jacquie - are you feeling any less exhausted?

 

Evie xx

Member
Posts: 107
Registered: ‎15-12-2016

Re: December 2016 Starters

Hi Ladies

 

I hope you are all felling ok at least comfortable...

 

Cookiepuss how did your results go? and i have also sent you my number for the whats app group...

 

I'm sure it was fiddler that said about her phone and bodily fluids being together this made me chuckle don't pull the wrong thing out and shock everyone...

 

Well i am feeling really good at the mo went out friday to a friends for her bday got in at 2.30 in the morning get me... Slept most of the day on saturday then was out again for my friends hen night saturday...

 

I have also contacted work, i was a bit disappointed as they have moved me to another shop for now which means i have to drive and find somewhere to park... but i'm going to give it a go and see how it goes with that!!!!

 

I also went for a run yesterday did 1.4 miles and aiming for 2 miles 2mrw... So just to say ladies your energy does come back pretty and quick and i hope it does for you all too...

 

Agerside last 1 done YAY... I know you still feel crap now but you will feel better soon promise...

 

So love to all and wish you a good night sleep

 

Sara

 

PS - Still getting night sweats too :-(

Member
Posts: 291
Registered: ‎15-01-2017

Re: December 2016 Starters

Cookie - have you had your results yet? Thinking of you today - and sending you strength.

 

I have just sent you my number, I'm so sorry for not doing it earlier. I posted the other day saying that I would send it, then promptly forgot. Chemo/surgery brain, just getting worse I think.

 

Re hot flushes - Jacquie/Cookie which brand of chillow pillow things did you buy/are thinking of? I have just seen something on the Live Better With website "GelO Cool Pillow Mat" that can be heated or cooled but wondering what you have spotted. I would love to sleep for an entire night again. I think Tamoxifen is also supposed to give hot flushes - does this mean that they get worse if we are already getting them?

 

Agarside - brilliant that you went to Take That and were also the driver. Sending you hugs today and hoping the SEs are starting to go. As you say, keep reminding yourself this is the last one.

 

Fiddlercrab - I bet a break from that heavy duty sports bra was good, unfortunately I haven't got anything else that I can fit my new melon boob into so am having to stick with it for a while. I see the plastic surgeon tomorrow for a check. I think he's planning to remove all dressings - that's going to be a shock for me I think.

 

Good news - I was finally able to ditch those horrible stockings. I was told I had to keep them on for 2 weeks but it was so hot having to wear them, especially at night.

WMJ
Member
Posts: 271
Registered: ‎20-10-2016

Re: December 2016 Starters

Hot flushes are a nuisance. I have them too and night sweats. On the positive side my hair doesn't get too wet.... mostly because I have so little... every cloud hey. Wearing hats is a pain also to cover the fact I have little hair. Definately going to have to be more bold & brave by going without. I don't care about showing my head off, I just don't want people staring and pitying me! X
Member
Posts: 141
Registered: ‎18-10-2016

Re: December 2016 Starters

Good luck Cookiepuss! Hot flushes are pure misery. Chemo made mine worse and I'm struggling at night. I just acquired a cool pillow and it has helped a little, the last couple of nights I've woken up less frequently. It doesn't stay cold all night but I suppose that would be a lot to ask!

Love J x
Member
Posts: 195
Registered: ‎29-11-2016

Re: December 2016 Starters

Hi - hope everyone is OK.  I've done a full day at work today which was quite enjoyable, mainly because nearly everyone was out of the office at a meeting and I joined via video-conference so I didn't have all the hassle of travelling.

 

WMJ - in order to send a private message I think you need to use a laptop or similar as I can't seem to send a private message on my phone.  You have to be logged in, click on my name and then it gives the option of sending me a message.  I have actually messaged you so you might just be able to do a reply if that helps.

 

Agarside - I'm impressed you managed to get to the Take That concert given that you are in the middle of the SE's but pleased that you enjoyed it.  I have to say that whilst all of the SE's are rubbish, the lack of taste made me particularly miserable especially as I enjoy my food.  Even now there are some things that I don't enjoy eating because I associate them with being tasteless during the chemo.  Chocolate appears to be the exception!

 

I have my appointment with the surgeon tomorrow when hopefully I will get the biopsy results - have to say I am getting more and more nervous by the hour so I'm glad I'm at work tomorrow to distract me.

 

I will also have to have my seroma drained - at the moment I have no need of the cumfi/softi insert for my bra on that side as it actually looks like my boob has grown back.  I've had to pop it in on the non-mastectomy side to even things up ha ha.

 

To add insult to injury I think I have started the menopause as I have been having terrible hot flushes over the last week but only during the night.  I've gone from someone who can sleep for 8 hours solid no problems to having about 90 minutes then waking up with a flush and then it takes me 30-45 mins to get back to sleep and so the cycle continues.  It starts in my head and feels like I am going to spontaneously combust.  I've had to move into the spare bedroom so that I can have all the windows open (OH hates having the windows open at night as he gets too cold).  I'm debating whether to invest in one of those Chillow Pillows to see if that helps. 

 

I've had most mobile numbers messaged to me (just waiting for Evie, SALowry and WMJ). Once I have the majority I will set up the list and send out a test message.

 

Right well wish me luck for tomorrow and fingers crossed that the news is good!

 

 

Member
Posts: 186
Registered: ‎20-11-2016

Re: December 2016 Starters

Well, I wasn't sure that losing one drain would make much of a difference, but carrying one around is so much easier, even though they were in the same bag. There's also more space for my phone, and some painkillers (yes, I am keeping my phone in a bag with my bodily fluids at the moment). Looking forward to getting rid of the other one on Thursday.

 

I have just taken my sturdy sports bra off and replaced it with a crop top for a bit of a break, and because there is a little sore patch under my boob. Now I have all sorts of weird sensations. The closest I can come to describing them are like braxton hicks contractions in my boob!

Member
Posts: 202
Registered: ‎02-10-2016

Re: December 2016 Starters

Hi All,

 

20170519_212559.jpg

 

Here is a pic or our view!   I really had a great time, but oh such a long day.  I did contact the arean (Manchester) before going as I would be taking a large bag with meds in, and had to make contact with medics there, in case I didnt feel well.  The nurse was an ex oncology nurse so was completely ok.

I was able to use disabled entrance, but steps to seats was a bit of a climb.  But managed it!

I had to sit down a lot, as just sooo tired but the buzz of the music keeps you motivated!  Was glad to be home after mind.  All good, I was the driver so immensly pleased I did it!

Day 3 - as normal, SE's kick in and I just feel sh*te - just keep saying to myself, this is the LAST time!!

These were the worse, with sickness as well.  Just lay on sofa or bed watching Greys Anatomy... just no energy, headaches, bone pain and this horrible mouth where nothing tastes as it should... arhgh..

 

So Day 5 now, and it should be "Big Mac" night...  just not feeling up to going out, like last time, so will have to be a take away for me...  

I just need my energy back!!  

 

Am reading all posts and trying to keep up, hoping everyone doing ok, and feeling much better!

Take care

A

x

 

 

 

 

Member
Posts: 141
Registered: ‎18-10-2016

Re: December 2016 Starters

Afternoon all, just popping in to say hello and hope you're all ok. Amanda hope you aren't too rough with side effects. And hope Take That was fab.

WMJ I had to go to the web version to contact Cookie with my number. Did it on my desk top in the end as it was doing my head in trying to find on phone. If you click on Cookie's name at the top of her post it should take you to her profile with a contact option to the right.

I developed allergies to various dressings during my treatment having never been allergic before. It's horrible. Hope you're still ok without one.

I have rung Guys and asked to be put on the list for Look Good Feel Better, stress and relaxation course, and complementary therapies. Have also registered for a Moving Forwards course.

Oncologist tomorrow. List of questions still growing!

How's everyone today?

Love J xx
WMJ
Member
Posts: 271
Registered: ‎20-10-2016

Re: December 2016 Starters

Glad to hear one drain gone fiddlercrab x
WMJ
Member
Posts: 271
Registered: ‎20-10-2016

Re: December 2016 Starters

Cookiepuss, how do you private message?
X
Member
Posts: 291
Registered: ‎15-01-2017

Re: December 2016 Starters

Evening everyone

 

WMJ - great that you are home and that you feel better than expected. Pain about the allergy to the dressings. The dressings nurse also used that Cavlilon liquid on me - it's like that spray on plasters you can buy and I haven't had any issues with it. Interesting that your surgeon doesn't use drains - isn't it strange how we all have such different treatment.

Oh and also great news about your hair. Mine is now growing faster in the middle of my head than on the sides so very soon I am going to look like a punk!

 

Cookie - hugs to you from me too. Thanks for offering to set up the group for us, that's kind. I'll PM you my details. I'm very impressed at all the things you have done today but not going to tell my family or they will expect me to get off the sofa and help!!

 

Fiddlercrab - yes, one drain done! 

 

Jacquie - hope your next week off helps and that your exhaustion starts to go. Lots of films on the sofa I think.

 

Agarside - how was Take That? I am guessing the SEs might have started to kick in but really hope they haven't.

 

Love to all

Evie xx

Member
Posts: 195
Registered: ‎29-11-2016

Re: December 2016 Starters

WMJ - I suddenly had an allergy to various dressings etc after being fine with them for a while, particularly Tegaderm.  I am OK with steristrips, silicon dressings and, strangely, cheap packets of plasters from Poundland!  You can ask for something called Cavilon (not sure of correct spelling) but it's a clear liquid that they can apply before putting on any dressings and it protects the skin.  This also worked for me really well.

 

Looks like a WhatsApp group is preferred - from what I can gather looking at the posts the likely participants are Jacquie, Evie, Agarside, Fiddlercrab, Snail, SALowry and WMJ and myself.  So, if everyone wants to private message me their phone numbers I can get this set up.  If you want to remain anonymous (eg not providing your real names) that is fine but I can assure you I am not an axe murderer/stalker although I am probably mad!

 

I had my seroma drained last Thursday but it has re-filled over the weekend - in fact, I don't really need any chicken fillets/stuffing in my bra on that side as it has evened out a bit with the fluid build up.  I think they will syringe it out on Tuesday.  Good job I am numb on that side as at least it doesn't hurt when they do it.

 

Hope everyone had a nice weekend.  I met a friend on Saturday and we pigged out on tea and cake!  Today I have been planting some pots up and trying to tidy up the garden.  I am a bit achey now as it's been a few months since I did any intensive gardening.  I can definitely feel all that squatting, bending and kneeling.  Oh yes I also cleaned the car but drew the line at mowing the lawn as I thought it a step too far being less than two weeks after a mastectomy.

 

I have just bought a FitBit so looking forward to building back up again.

 

 

 

Member
Posts: 186
Registered: ‎20-11-2016

Re: December 2016 Starters

One drain gone!

WMJ
Member
Posts: 271
Registered: ‎20-10-2016

Re: December 2016 Starters

Thanks Snail, my first thought was to use a sanitary towel but as it was for the blisters I thought it may be best to use a sterile dressing. However not using anything and appears to be okay overnight. Did you have to have any fluid siringed off? My BCN told me that this maybe a possibility when I see them Tuesday if there has been fluid build up. 

 

BTW. my hair has started to grow a lot over the last few days, I was thrilled to see all the lovely white/grey hairs appearing on my head! 😊To think this time last year I'd have been mortified by grey hair appearing on my head. The issue is it has also started to appear in areas I don't want it, namely my chin 😡

XX

Member
Posts: 521
Registered: ‎28-10-2016

Re: December 2016 Starters

Glad to hear things are going ok. I used sanitary towels to mop up leakage as they are cheap and non adherent but I could wear a top. I didn't have drains either so things were a bit messy for a week or so but my surgeon used a lot of glue x
WMJ
Member
Posts: 271
Registered: ‎20-10-2016

Re: December 2016 Starters

Hi, Thanks for all the good wishes and asking about me. Got home this afternoon, so had a 2 night stay. ALl went well and fel better than I anticipated. Obviously uncomfortable etc, keeping with the painkillers and started the excecises😯.

OH had a bit of a 'lymphodemia' panic this afternoon because I have had issues with dressings. I now appear to be allergic to any dressing. They sprayed me with a clear dressing, which seems fine,  but for some reason put some steri strip across & low and behold I have blisters under the steri strips. Strangeley enough 2 weeks ago the steri strips were fine when port removed! One has now leaked so OH rung and has been out to buy dry pads but can't hold them on with anything & a bra or crop elastic top are both a no no. Just have to se how I go, I am back on Tuesday for them to take a look at the wound. 

BTW... no drain, my surgeon doesn't use them! 

The numbness is quite bizarre I have to admit.

My rads, fingers crossed are pencilled in to begin 13th June, so I will be joining those of you starting in June on that thread. I also would certainly like to keep in touch as this forum has helped with my sanity through all of this and by the forum I clearly mean you lot. So thanks & that's another hurdle over with.  😘

I will look over the thread and catch up with what's going on in more detail over the next few days.

Take care.

XXX

 

Member
Posts: 141
Registered: ‎18-10-2016

Re: December 2016 Starters

Aw Cookie hugs to you. It must be so hard. What an awful year you've had.

Think What's App would be good and recall that was Evie's preference. Also v easy to do and no administration required. Can easily add photos too. Let's see if we can get you a decision!

Love J xx
Member
Posts: 195
Registered: ‎29-11-2016

Re: December 2016 Starters

Ha I am going to milk the chemo brain for a few months yet - a good excuse for forgetting stuff.

 

It is very easy to set up a private group on the BCC forum or am happy to do via WhatsApp - just let me know and I can sort out quite quickly.

 

Just having a moment as a friend of my parents has just emailed me some lovely photos of my Mum from about 5 years ago when they were on holiday in France.  I can't believe how well she looked - good memories but has still made me cry.

 

 

 

 

Highlighted
Member
Posts: 141
Registered: ‎18-10-2016

Re: December 2016 Starters

Hi ladies,

Snail, I've not experienced anything like you describe. Sounds horrible and I wonder if you need burn cream. My scar is very red and a bit itchy but otherwise ok. I've a tanned and I suspect soon to peel area on my back behind the treated clavicle, and redness in some places especially under my breast. That's the most uncomfortable bit for me. I know all my burning etc might not be out yet but really hoping it doesn't get worse.

Amanda I'm so jealous! Hope it's a good night and you're feeling well.

Evie I'm glad the results were ok. So stressful waiting to find out.

I'm happy with either FB or What's App. It's not all that difficult to set up a closed group. What's App might be easiest for access/notifications etc.

As for when chemo brain goes, I'm going to use it as my excuse for months to come!! I definitely still have it. I went to my GP today because work asked me to get GP view on what my phased return should look like. Although I've been back in the office for weeks and worked through radiotherapy! Anyway she signed me off for next week as I'm so exhausted and have occasional woozy spells. That aside I took her a prescription I found for some cream and said I've no idea what this is for or if I asked for it, is it in my records! 😄 She thinks I asked for something for my hands when I saw her before radiotherapy but who knows!!

Hope that drain is out soon Fiddlercrab. Mine was removed at home by the nurse.

WMJ hope you're ok.

Love J xx