May 2017 chemo starters

[Raitchr]

Worked there 9 years and never been banned from holiday. I just work purchase ledger/creditors, not even in the main Accountancy section. Doesn 't apply to FM as he has nothing to do with Year end apparantly, don't ask me what he does do as I have no idea. Will have to look at contract to see what it says. Seriously considering going to GPs in March and saying I cant cope with work stress. Have to be out of my phased return period otherwise half pay again.Got another meeting next Weds but not when I am in the office, may have to change hours to attend it.  Have suggested to husband he get a proper job so I can stay at home. Got my PIP meeting next week so see how much I get if any at all!

Hx

[Jay68]

Sorry H to hear your employers are being unreasonable - I know what I'd do if I were you, go get Dr's certificate and be signed off.

Can they really ban you taking leave during that time - what does your Contract say - worth checking.

Why doesn't it apply to the FM?

I've worked in legal work in the past and I'd be surprised if they can get away with all of this - may be worth seeking some advice.

How long have you worked for them?

You are entitled to rant away and I'm pleased you've done that as to get it out helps.... hope your evening improves. x

[Raitchr]

Rant warning. Work today, was told that we cannot take any holiday in April when my boys are off school. It is year end at work and all leave is banned. So asked how can I take 3 weeks that I am owed as want to be off with boys. Have always had 2 weeks at Easter with them as we usually go to Spain. They said take them out of school in term time then. Really? What planet are they on?? I then said ok, can I book 2 weeks from 19 March until 3 April (I am not seriously thinking of doing it but to make a point). They said no as too close to year end! My next question  was does this apply to the whole department including the Finance Manager as he has kids at school? No, it doesn't apply to him! Next questions was can work organised childminders to look after our children if we are forced to work? My team is 3 part time working mothers. No, why on earth would work organise it. So we can work! Anyway was close to telling them to stuff their job today. Came home in a mood. Rant over!

[Jay68]

Hi Daffodil - thank you. Reassuring it's not just me! and again at night always worse isn't it typical. I still use my little heart cushion - really don't feel I could be parted from it now!

My appointment with onc for 6/8 week check up isn't until 13 Feb. I'll be happy to hear what you find out at your appointment next Monday.

Have a great day too!
J x

[Andi71]

Hi Rosie, well what you’ve said sounds very reassuring, thank you! It’s great to hear your swimming and doing excercise classes. There’s hope for me yet! It’s good that your having a programme of exercise tailored specifically for you and your recovery.
I go back to hospital for a check up on Breast and tummy 3 months after my op. I had to go in a week after the op for them to replace dressings and check on everything. They were happy to leave it to me to contact them if I had any problems. To be honest I only want to return if I really have to. The less hospital visits I have the nearer to normal I’ll feel. On the 8th March I’ve got a session with a personal trainer at the hospital along with other DIEP ladies to help us safely get back to getting into shape. It’ll be good to meet other ladies who’ve been through this procedure and exchange notes.
Being at home all day is tiring and boring. My poor car is itching me to get out in it 😃
Your right in that this whole process can get you down. I keep picking myself up over and over again. I guess I’m trying to run before I can walk.
I hope you are still doing your 3 times daily exercises 🙂 pain free. I’m doing mine but my Breast hurts when I do.
Thanks once again for answering my questions and I’m chuffed your doing well 💕 xx

[Daffodil54]

Hi Jay

I am also finding that I have tenderness in the chest and round to underarm. It seems worse at night. In fact last night, I woke up with a sharp pain around my scar. Most of the time it is fine but I still feel more comfortable with my little heart cushion under my affected arm. 

I have my six week post rad appointment on Monday so will ask if that is normal.

Have a good day everyone.

Dx

[Rosie65]

Hi Andi, I remember it took at least two weeks to feel even vaguely normal! I didn’t have any swelling but stomach was quite tender for probably six weeks although it gradually improved each week, in that although I was aware of it the tenderness became less and less of a problem. To be honest I had more boob tenderness and thought that would never go.

I’m about 9 and a half weeks post op now and it all feels fine, there are numb areas but I think they will always be there, ie round the scar. I’d had two c-sections previously so it was numb anyway and they just reopened that scar and made it longer.

The belly button is yucky but you will get there. I was advised to clean it with a wet cotton bud just gently roll it round but don’t force it and gradually all the gunge will come out. Mine is still a bit red but gunge free now. I didn’t remove the tape for first four weeks as they didn’t give me any until then and by that time the scar wasn’t so tender.

It does get you down I know, I think because it comes on top of 6 months of chemo and you think you’ll never feel well again, but you will and it will feel even better because of what you’ve been through. Wearing the bra, knickers and tights 24/7 does get you down but I’m sure it doesn’t make too much difference if you leave them off now and again.

 I’m exercising again now and that’s helped as I’ve had shoulder problems since mx and I’m trying to get into shape before going back to work. Mainly swimming but also body balance class where we do a lot of stretching. I have a Health MOT at the gym today and she will give me a programme of exercises to help.

When do you go back to the hospital again?

[Andi71]

Jay,

Rest assured that he’s up to something 😃 xx

[Andi71]

Rosie,

How are you doing now lovey?  How many weeks post op are you now and what have you been up to?

Ive got a question or 2 😃  ...

2 weeks after your operation how would you describe how your tummy felt?

Mine is still swollen and the weirdest thing is that the skin sensation around my belly button is numb.  Did you experience this?

Also, your belly button ... how long was it before yours was glue free?! I’m not keen to poke about this area just yet but it gets soap and water to it daily when I shower.

Also, when did your tummy not feel sensitive/sore to having the tape removed to be replaced?  I’m really not looking to pulling mine off 😬 Feel light headed at the thought! After everything we’ve been through you’d think this would be the last of my concerns!

I hope you are doing really well 💕

[Andi71]

Treehouse,

I know what your meaning lovey 🙂 and it’s so good to hear men expressing their feeling and stories on line too 👍🏻

[Jay68]

Mai, did you go for your prosthetic and bra fitting last week?

[Jay68]

Andi, yes it was so enjoyable! He'd had to do lots of planning - obviously without me knowing anything - and he said this morning before leaving for work - "my goodness, that was really difficult! - I've realised I don't like organising things by myself...!" bless him! But he really did good and proved he can do it!

It was a late one and I'd had lots of brain stimulation - amazing how exhausting it is! I may well sneak in another nap after work and before son home from school!!

I said to hubby this morning - I hope there's no more BIG surprises - he assures me not - but I'm staying on alert!!! x

[treehouse]

Interesting Andi it is mostly men who have commented about heart surgery and it is really eye opening reading men sharing my emotions.
That sounded really sexist. It wasn’t meant to be. I was overwhelmed by there ability to express what I was struggling to.

[Andi71]

Jay,

Oh how lovely that your hubby kicked off your birthday celebrations with a surprise meal with those closest to you! I’m so happy you had a great evening and hats off for staying up so late!! I’d sneak another nap in later if the mood takes you 😉

I wonder what Wednesday will bring?! ... 🎁

xx

[Andi71]

Treehouse,

As soon as you are able to lay on your side comfortably you’ll be sleeping for hours!! Hold onto that thought lovey 💜

It’s how I am getting through each night at the minute, knowing each day I am healing and getting closer to getting into the sleep position I want to be in.  But in the moment at 1am and 3am admittedly I’m cursing away!! Like you, there seems to be no way of controlling my broken body thermostat!  If there was something to fix that how wonderful things would be! We’d all be a lot happier. I also don’t like climbing into bed, I see it as a place of restricted movement, lack of sleep, discomfort, hot sweats and soreness. Oh well, time will sort this 😃

I think it’s good you’ve been reading other people’s blogs on heart surgery, hopefully what you read will make you feel more ‘normal’ if you know what I mean.  I hope the ladies on that site are as fantastic as the ones we’ve come to know on here!  Will be interesting to see if you set off the detectors at the airport!! That little card you’ve been given could well prove to be your get out of jail free card 😉

Sending you big hugs lady 💕 xx

[Jay68]

Oh Treehouse it really was wonderful! It's good days like these that make everything so worthwhile.

Not sleeping through the night, is one of the worse things ever - I've always said if you get good sleep, everything feels so much better in the morning! It's a bit like the sun shining!

Talking of herbal remedies - I swear my lavender pillow/room spray together with my calming aromatherapy pulse point gel help! I've seen adverts for Badger sleep balm on facebook - I wonder if that works.....?? I'm not reverting to pills - you never know what side effects they have hidden in them.....!

[Jay68]

Wolfee, Daffodil, MJK and Katie - a post rads question!

Especially those who had MX (with lymph removal) - did you or have you got the same feelings inside as you had post surgery? ie bruised ribs and stiffness in the affected arm/chest areas?  8 weeks following surgery and before rads began, all this had disappeared.   I know, from my final review with the radiologist specialist she said 6-8 weeks for full recovery and I'm only just 4 weeks but I am beginning to wonder if these areas will ever feel anything like they did before rads began?! 

On the outside - all looks good now but it's just these internal weird sensations that are consuming my mind....

[treehouse]

Jay that sounds wonderful!
I love hearing about the good days . Puts a massive smile on my face. 😀🎁
I love the fact that so many people have been thinking of you but also that you have had a fantastic weekend, happy and living life with loved ones. And more to come.
Have a good rest and let us know how the other celebrations 🎉 go.


Andi I hope your rule breaking continues to bring comfortable nights. I am in awe of you ladies who had flap reconstruction.I was inspired and tried my vest with hidden support instead of a bra last night. Not convinced it made any difference.😟
My mother is on the hunt for herbal remedies as she can’t sleep due to arthritis either.

[Jay68]

Early birthday celebrations began for me over the weekend - my goodness, I'm exhausted!

Started yesterday lunchtime - hubby announced Saturday - "why don't we go out for lunch tomorrow?!" - he's never suggested this quite so spur of the moment in the all time (32 years) of knowing him - so that was a huge surprise - he even made a "phone call" to book a table!  We arrived at 2pm - I was starving(!) - pub was very busy - one table I could see was free - reserve plate had a different surname(?) - hubby announced our arrival and lady behind bar directed him to the room at the back - upon entering there was all my nearest and dearest family..... WOW! what a surprise!  It truly was wonderful.  Had a delicious 3 course meal and thoroughly enjoyed it.  Got home 5ish - off out 6.30 to meet up with hubby's 2 brothers and sister and their other halves - an evening of reminiscing and laughter - just fantastic.

Got home and in bed by 11.30 - exhausted.... fell asleep by 12 - woke 4 for toilet and took an hour to drop back off, woke rudely at 6.30 by the alarm clock.... hence, I've returned to bed and planning a little nap before going to work today!  

The big Birthday is Wednesday and next weekend is our big weekend in London........!  

[treehouse]

Sleep continues to elude me!
I think it’s my heart surgery that’s the issue. I am still forced to sleep on my back which is uncomfortable for many parts of my body ; hips, knees, neck, shoulders etc. I do occasionally roll on my side but roll back 5 minuets later regretting it.
I wake up often either hot or sore and we start all over again. I am not enjoying going to bed. It was easier in hospital as the pain killers knocked me out and I was woken up every 4 hours anyway.
The scar thing I think is because it is so invasive. Knowing someone got a saw to my sternum and has stopped my heart is a very strange thought. I have stitches in my heart. Boobs are so surface ( to be honest I wore such padded bras before mine were on outside)but it is quite literally the heart of me.

I have actually been reading some blogs of other heart surgery survivors. It is definitely a procedure that messes with your head. It is a relief to find someone feeling the same.
I got a card in the post last week. Not a get well card but a card to keep in my wallet from the medical company that makes valve rings. Mine is registered to me with number, date and surgeon. I wonder if I will set off the metal detector in the airport from the wires holding my sternum while it heals.

But yes ladies I am extremely grateful for the skilled surgeons and feel extremely proud that I have got this far and survived so much. ‘Jesus crist’ Is the usual response when I finally tell my story. My scars will be something to be proud of when the pain has passed ( literally)

[Andi71]

Hi Mai,

Wow you really have done Croatia!! Were you there for 2 weeks or did you do all these areas in separate trips?! My problem is I like the look of every one of those areas!

I hope you slept like a baby after your lovely soak in the bath.  I managed to only wake 3 times in the night, unbelievable! 😃

Have you thought about having reconstructive surgery Mai? Im just voicing a thought based on your comments about your operation site.  And you are by no means a freak!  You are a strong beautiful women who has bravely fought to be here today!!! 💕

xx

[Mai7]

Andi, Croatia is amazing. I've been to Split, Zadar, Plitvice, Krka, Zagreb, Hvar and Brac and recommend seeing all of them!  Glad you had some braless sleep.

Treehouse, I go through different phases about my scar. Sometimes I'm like Janis and feel its part of my survival and I'm alive because of it. Sometimes I wish I just had a scar on a boob instead of an empty space as I feel like a freak.  I don't get upset about it but deep in my soul I'm sure there are buried tears.

I just had an amazing long bath with Epsom salts and aromatherapy oils, so relaxing. Camomile tea and off to bed!

[Andi71]

Tatyana - Greece for 2 weeks!! 🌞🏖 gosh how lovely to have that to look forward to and so close!! Just what’s needed.  I’m desperately wanting an overseas break.  Got to fit it in around Herceptin jabs every 3 weeks and school hols though. Your dentist surgery sounds lovely!!! Little kind gestures truly do make a difference.  Mine unfortunately is private and I paid £84 for a check up and x-rays.  My dentist doesn’t have a great bedside manner.  Looking to maybe swap.

big hugs lady 💕 xx

[Andi71]

Jay - Missed 24hrs in A&E ... will watch on catch up 😃 Have a lovely day xx

[Andi71]

Treehouse - ooh how lovely!! ❄️❄️❄️ We woke up to rain ☔️🌧 xx

[Andi71]

Treehouse - I know what you mean - I struggle with my breast.  I guess seeing our scars is a real reminder of what we’ve been through, and it’s hard to digest the enormity of it all.  A year plus ago we were all going about our lives normally, totally unaware of what was to come.  We are all like wounded soldiers, having done battle with this disease and it will have an impact on us all until we feel more consoled that we have lived through it.

I have tape all around my new flap of skin which has effectively replaced my nipple for now.  I feel quite sicky/lightheaded when I see it, but I’m making myself look at it.  I’m still very bruised and swollen. 

My belly button is full of purple glue and internal stitches.  So of course I’m scared to touch it, but I know I’ve got to let water and soap do it’s thing and bravely remove it 😬

My tummy scar is big (hip to hip) but is covered by tape so I’m less fragile about it.  I have to remove this tape once a week for 5 weeks and the glue lifts off as you unpeel it, it’s gross 😬

On a positive note, I’ts good to hear you’ve a lovely family holiday booked!! 👨‍👩‍👦‍👦👒👙🧢🕶🌞🏊🏼‍♂️🛫🏖 It’ll be a holiday to remember!!

We are looking to go to Croatia.  It’s a beautiful country, lots of beaches and places to visit.  Lauren said her criteria was ‘beach and culture please!’ Jessica’s was ‘short flight please’.  The youngest is easier to please 😃 Currently ‘surfing’ holiday websites.

Sending you big hugs lady 💕  And your scar .... won’t bother others around you, they’ll be in absolute awe if anything.  Plus there are creams on the market that’ll help reduce its ‘look’. xx

[Andi71]

So last night I broke all the rules purely for my own sanity and sleep!

Off came the post op bra that’s been cutting into my underarm and making me feel sore and uncomfortable.  So much for being the right size according to bc nurses.  So I wore a vest top instead.  Then off came my oversized suck my tummy in pants and I wore normal knickers...... I actually slept 7 hours!!!

I have woken up a different person.  Today I’m taking back control and behaving sensibly with my post op getup.  So James is upsizing my bras to ones with adjustable straps too to make life more bearable, and the big girl pants are the right size, so having to wear them again.  Tiredness certainly made me more emotional yesterday so I’m hopeful tonight will be better than late. On the plus side, I can now put my own socks on 😁 small triumphs!

[treehouse]

Woken up to snow ❄️

[Andi71]

Mishy - How lovey having cuddles with your baby granddaughter, very special moments to be cherished. I suppose it’s also lovely having her as the perfect distraction to other stuff going on.

i am feeling better today thank you.  I think I needed my melt down to help me shift forwards again. xx

[tatyana]

Mishy, so glad that you are having some quality grandma time with the baby, what a joy!

[Mishy18]

Really enjoyed my baby sitting last night shes 15 weeks Treehouse currently asleep on my knee having a cuddle 💖

[Jay68]

Heather  - you stole the words right out of my mouth!!! - exactly how I feel - I had no option!

On another subject, did anyone see this weeks' 24 hours in A&E - what a tragic turn of events which made me beam at the end - reminded me, in a way, of us ladies, coming together and supporting each other throughout and after the traumas.  x

[Raitchr]

I am used to my scar now. Had my op last March. I dont look at it often but when I do I just remember it saved my life.

❤ H

[treehouse]

Mishy I love hearing about the baby 🍼
Glad you are having some quality time. How old is she now?
I hope you get some sleep x x x

[treehouse]

It’s our first time heather. Can’t see us being able to afford it again with 4 kids.

Ok so at the risk of sounding shallow. Does anyone else struggle to relax in the bath when you come face to face with your scars. I can’t see my boob scars due to their position but the other one I can’t miss! In fact it still has a scab at the bottom that has not come off yet.
I guess I have not fully come to terms with it yet. It’s easier with clothes on. I also don’t recognise myself with this hair yet.
It is thicker than it was which is a bonus 👍

[Raitchr]

Shame we are not there at the same time Treehouse, would have been good to met up. We are in Orlando for the first week then a week on the beach. Have been quite a few times before so no disney but doing Universal with the boys for the first time.

[treehouse]

Andi I hope you are feeling better. These days will come and go.
You are still healing.( We all are to sone extent. )
Lots of love x

[treehouse]

Heather we go Aug 7th. The kids are so excited. I am just taking each day at a time.

I am watching desperate housewives box set then early 🛀 bath with Epsom salts. Hopefully I will get some sleep 🛏

[Mishy18]

Andi sorry you are having one if those days aren't they awful but uts not long since you're surgery so i think you are doing fab x got my granddaughter who is only 3 months staying over shes just gone off fingers crossed!!! I really admire people who have really young families that have had to go through this i really don't know how they all cope!! I think the sleep dep is showing on me too i have dark circles under my eyes
Tatanya you're dentist sounds lovely i think you are marvellous by the way 💖
Treehouse hopefully you will will get a better sleep tonight i bet i don't with little Ella being here but i have also looked forward to this since she was born her nana has had all the baby days whilst i eas having treatment so its finally my turn fir some granma bonding 💖i do have help on hand if i need it
Buddy really pleased you have a holiday to look forward to after sorting your ins reassuring words too from your onc xxxx

[Raitchr]

Travel insurance try 

Insurewith

Medicaltravelcompared

Insureandgo

H

[Raitchr]

Treehouse we are going to Florida 24 July to 8 Aug! When are you there???

[tatyana]

Speaking of dentists- yesterday was my first visit since chemo, dentist and hygienist both said everything is fine, which was a relief! They are two lovely ladies, at least one of them shed a couple of tears before passing me the tissues, and they loaded me up with samples of mouthwash and toothpaste for my next lot of chemo and said if my mouth is bad I'm to phone and they will fit me in straight away. Aren't people nice!

[tatyana]

Treehouse, also try insurancewith.com, they ask a great many questions but I got a really good quote. I have a pre-chemo assessment on Tues (back on the ward, hey ho), then all being well we're off to Greece for a fortnight and start the new chemo after I get back. Happy hols, treehouse and buddyfan!

[Jay68]

Sorry to hear you're under the weather MJK - dose yourself up and hope you feel better very soon.

Well done Buddyfan and Treehouse on having booked holidays.  Something lovely to look forward to.

x

[Jay68]

Mai, I've got lower back ache - not all the time thankfully just now and again and managing without any pain relief, it's very strange - I'm also finding the area under my bra **bleep** my MX side very uncomfortable!

[Andi71]

😢 I’m having one of those days, can’t stop crying, can’t get comfy, can’t sit for any length of time, boob is  sore, tummy sore, sore throat, bunged up nose, exhausted and I can’t even get excited about going to bed to sleep because I’m not sleeping!  I’ve had enough today, I just want to feel ok again.

[Jay68]

I quite agree it's definitely a dressing gown day - I didn't actually put clothes on until 2.30 - and only did that cos I wanted to go visit my Dad and take the dog out for a walk!  

Wore one of the shorter wigs round to see my Dad - first thing he did - laugh - 2ndly said - it makes your face look fat and 3rdly I like it very much!  I said perhaps I'll stick with the current one to which he replied - no it's very nice and suits you - it makes you look more.... mature!  Thanks Dad!!!  Love him really! x

[Andi71]

MJK - Sorry to hear you’ve caught a cold too.  Take it easy 💕

[Mai7]

Glad you have nice holidays booked BuddyFan anTreehouse. Something nice to look forward to. 😍

Andi, tamoxifen is going fine after 6-7 weeks though I'm on a break from it whilst I wait to start a clinical trial. Can't have more than 8weeks of endocrine therapy before start and am now waiting at least two weeks to have CT and bone scans before I'm accepted.  I'm ER/PR+ HER2-.

I had a good but busy week at work full time but coped pretty well, just have persistent lower back ache.  We went to the cinema last night to see Three billboards outside Ebbing, Missouri. I was good, subtle but good dark humour distributed well. The soundtracks were also good and the song titles resonate well! https://youtu.be/h4EfNhK4Ep0

Have a lovely weekend everyone. Xxx

[buddyfan]

Scuse typos, new sodding touch keyboard since new ms update.