Hi Sam,

So sorry to hear you are going through this awful time. But there is light at the end of the tunnel!!

So let's go through the practical things. When I went into hospital I knew I was only going to be in for the day but there may be a possibility I would have to stay in, so I packed pjs, dressing gown, slipper, toiletries, something to read (lots of waiting), I had been out and bought some soft material type bras, a shirt to wear to come home (so I wouldn't have to lift my arms to get dressed). I came home with a drain fitted but the hospital did give me a bag to put it in, which I wore across my body. At home I hung the bag with the drain over the headboard at night. Luckily I'm not someone who moves around much at night so it didn't cause me too many issues. The drain tube is pretty long. I did stock up with pain killers so had plenty for when I got home.

I think anxiety is the thing that makes the whole thing feel worse but I had a partial mastectomy and actually it wasn't as bad as I had been worrying about. 
Just make sure you listen to your body and rest when you can.

Good luck xx

Hi Sam,

Caroline has given you the practical information you need. I also took an MP3 player and listened to my favourite music in the hours before my surgery. I am embarrassed to say, I didn't realise I was singing along to most of the tracks, to the amusement and possible annoyance of the others in the ward!

I had a full mastectomy and, honestly, the drain didn't bother me at all. I slept with it in its little bag by my side.  The district nurse came every day to empty the receptacle- a little plastic bag holding the contents. It was no trouble, I could have done it myself if I hadn't had two overprotective children who just wanted someone to check me every day. To be honest, I found recovery from the mastectomy to be very easy, BUT,  I didn't have the DIEP, so, hopefully someone else will be able to advise you on that.

The sentinel nodes will be taken at the time of your mastectomy and you won't know anything about them until you hear if they were clear or not, a couple of weeks later. Don't worry if they say they found cancer cells in the sentinel nodes, because they will book you in for another operation to remove the axillary nodes, I.e. the ones in your armpit to  make sure they get rid of every sign of cancer.  To be honest that is a bit more annoying to recover from but nothing unbearable.  
 

Good luck! If you have read this thread from the beginning you will know that two years on, Sam, Caroline and I are getting on with our lives cancer free and happy!

Christine xx

Hey Christine, ladies, 

I thought you had forgotten about me?

How is everyone getting on? I've had a lot going on. Lots of appointments. 

I've had my first treatment. My Chemo was originally for an hour, but I had to have a cannula in the back of my hand. Because of this, it lasted 2 hours. (All explained below).

I was supposed to have a port fitted in my inner upper left arm, as the lump is on my right and the nurse wanted to steer away from the breast where I might need an op to remove sentinel nodes. After 4 attempts, the nurse apologised and said she would have to try the right arm, and she still couldn't get it in. I ended up with 2 badly bruised arms and nowt to show for it. The nurse ordered a chest port, which  should be fitted soon (I hope ) in time for my next round.

All went well after all Chemo was administered, I didn't feel a thing. While waiting for my hubby to pick me up, I felt an immense wave of sickness threatening to splurge out and embarass me in front of all the new found friendly crew (patients and nurses) I'd met and warmed to. But I held it in like a good-un. Everyone was asking "are you alright Vee"? I didnt turn around when I headed for the door on my departure, I could only raise my my hand above my head for a quick wave. 

By the time I got home, I felt so sick, I only had some water, put my pj's on and crawled into bed, and there I stayed until my bladder could take no more. I didn't even wash the conditioner out from having the cold cap. The nausea has continued since  Chemo, but not as bad. Today, I actually felt somewhat human enough to take hubby to dialysis, put washing on after  changing all bed linen, put dried clothes away, washed dishes and put them away cleaned rest of house, washed the car, did homemade soup for lunch and vacuumed. 

I have never felt so ill in my whole life! When I was in bed feeling sorry for myself, I could imagine everything piling up and getting out of hand, so I used the little energy I had to sort stuff out. Someone please tell me it gets a little better. 

Take care ladies

Much love  

Vee xxx

Hi [@Samneedscoffee21]‍ 

Sorry for delay but as you’ll see from later post I do have a good excuse (rather than being my usual cr4p self!).

I had a mx, sentinel node clearance at separate op and delayed DIEP.  I was sent home with drains after mx and whilst they are a pain they were fine, I think I had them for less than a week and slept fine with them, yep you’re in fear of pulling. Them out but I didn’t…a V pillow really helped in this respect and I’d suggest you get one if you haven’t already, helps you remain on your back which will help with any pain as well.  Worth mentioning that they will give you whatever plain meds you need in hospital (I was on fentanyl I think, you push a button when needed) and just paracetamol and ibuprofen at home.  I do however have quite a high pain threshold and was never actually in pain, more discomfort at times…but I don’t have the same medical challenges you do.  In this respect ref lasting discomfort the only place I actually notice it is in my armpit where the nodes were removed and the upper arm needs a good massage every now and then, stretches are a must when needed too but its nothing that stops me doing anything.  Only notice recon boob discomfort when easing self back into underwired bra post operations and stomach never had pain just feels odd really.

Re Packing for hospital I took far too much! I’d suggest front opening pyjamas (they need to do hourly checks on new boob for first 24 hrs post op so easier for all), long recharge cable (with phone/iPad whatever to keep you entertained), note book (I’m old school and like to write down the barrage of info that you’re given ref pain relief at home, appointments, physio, what you can’t do etc.), post mx bra and compression garments (every hospital is different, I had post mx bra from M&S and compression pants from below boobs to below bum….all areas impacted covered, my top tip, though expensive, are high compression pants with hook & eye around the sides as the most challenging thing post DIEP surgery was pulling up very tight support pants (nearly cried in frustration, very unlike me!!)…poppers or hook & eye around crotch also helps going to the loo ALOT easier), a water bottle with a long tube was great so you didn’t have to move a lot (your arm will be unable to push you up the bed when sat up), lipsalve, snacks (hospital food can be ‘interesting’ and you will be without food for 24 hrs so may well be hungry and food may not be readily available), I wore big leggings and a large t shirt & cardigan to leave hospital in…comfort is the name of the game, in hospital was just in pyjamas, some shoes/trainers that you can walk easily in (with physio they’ll have you walking up & down stairs before you leave).  I did manage to have one shower before I left hospital but once at home had prison/sink washes in the main.  I did manage to shower with the drain but it was annoying!  I also found a drain bag useful as I did a small cushion for car journeys so that the seat belt didn’t press upon new boob - also useful for keeping arm away from side at night (as under arm will be uncomfortable).  Another thing that helped for the sofa to watch TV was a wedge shape cushion (the one on my picture!).  But don’t buy anything you don’t need, I did waste money on stuff I didn’t use.

There is an excellent facebook group dedicated to DIEP where there’s loads of ladies who are going to have or have had DIEP which I found to be an excellent source of info and regularly input into, private message me if you want details.

Good luck and ask whatever you like, Sam X

[@Samneedscoffee21]‍ 

Having read Christine's and Caroline's replies realised I thought you were to have full node clearance and nit sentinel node biopsy.....this was pretty painless for me, it was the full node clearance that was (and still is, at times), uncomfortable....don't want to worry you unnecessarily!

Sam

Hi ladies

Sorry its been so long, things are and have been challenging with my father.  Am up in Leyburn currently, was trying to work up here as well as spend time with him and help out my step-mother but the working bit is proving to be an uphill struggle, there’s so much to do to help my step-mother as my fathers condition worsens.  He’s got a friend around currently so am trying to occupy myself rather than reflecting on his condition and inevitable death….its not really working but will battle on all the same.

On the plus side I have FINALLY received the letters of administration in connection with the mothers death last year so there won’t be too much overlap of parental death sorting! Bloody ridiculous eh?  Anyway her house is now on the market so hopefully that will be sold soon (and whilst the housing market is still buoyant).

However still keen to pass on my experts knowledge and see it as my role to share experiences that can often be seen as painful or negative so for our pals who are still going through treatment and surgery…

Vee, 

I too had a PORT fitted, best decision ever!  And like you had to have an annoying chemo the old fashioned way (via cannula) before the port was done.  It is sooooo much easier and less painful with the port…and less fannying around for the poor nurses trying to located often elusive veins too.  Hope you get yours soon, really small & straightforward operation btw and you can’t tell its there other than a small scar.

You really need to tell your BCN about the sickness as they will have you initially on the cheaper anti-sickness drugs that they sent you home with and you may need the more expensive stuff so please do tell them how you were so they can give you the right stuff booth before the chemo & after.  I was very lucky that I never felt sick per se, just nauseous and rough for the week after, but how you feel is very personal and everyone is unique so comparing experiences needs to be done with caution.

For most people (I was on the MacMillan forum too so have read quite a bit about those going through chemo- MacMillan’s online community have a breast cancer monthly chemo thread for those going through it which you may find useful (I did)) they feel rough for the first weeks post chemo (I had mine Weds, took drugs till the Sunday/Monday and felt rough till the following Saturday) so fingers crossed you’ll start to feel better soon.  I was able to work and exercise outside my rough week.

It is generally the case though that as the chemo sessions get towards the end the after effects do get somewhat worse, in my experience they do but are still very manageable.  I had my final chemo (12 in total maybe?) Dec 2019 and managed to eat a large plate of Christmas fodder a week after (I am a pig however!).

And I agree with Christine re trying to do too much straight after chemo, please be kind to yourself, you’re no good to you or your hubby if you overdo it.

Good luck Vee and hope everyone else is well XX

Hello Sam the superwoman,

Do you realise that you never gave us one hint of what you were going through during your chemo etc, I knew you were being stoic about it all but you were just lying to us!  I'm glad you are telling it how it is, now, so that Vee will know what's in store and what to do to make it as bearable as possible. 
I'm sorry you are going through it again with your father.  My parents' deaths were only 14 months apart 
and I was the one who had to sort everything out. My dad had been lured by a local solicitor and the chance of a free will, to make them the executors, who took their permitted year,  and they sold their house through their associated estate agent for half its worth! It's no wonder I ran away then, to an adventure in Central America with a very unsuitable new boyfriend.  I saw the error of my ways after 6 months and came back without him!  Actually, I found a lump in my breast - no relation to my real cancer 25 years later - and was advised to return to zum to get it checked out properly ( and for free).

I hope you don't go mad, like that, when it's all sorted! 
Thank you for taking the time to help Vee in the middle of everything that's going on around you. But, as I keep making it my business to tell others, you need to take care of yourself in the middle of everything! 
I need you to live up to your admission to be lazy, so I don't feel guilty about my absolute slothfulness in cold weather!

Good luck, Vee, I knew Sam would be a count of information for you.

Samneedscoffee21, Good luck, also, I hope you got the advice you were hoping for

Caroline, hoping everything is going well for you and your family, don't work too hard!

Lots of love to you all

 Christine xxx

Hi Sam, Christine and others!

oh Sam, sorry to hear things are getting harder with your dad's illness. Funny (or not really) but have just been listening to a podcast, while at the gym, with Greg Wise taking about caring for his sister at the end of her life. There's also a breast cancer surgeon who had breast cancer who is on instagram and does weekly videos where she answers people's breast cancer questions. She also has a website - Don't Ignore the Elephant where they do podcasts about things we don't like to talk about. Sam, might be worth a listen. They also do one about death. I suppose, working with a palliative care team, I find it all fascinating! 
 

Christine, hi lovely lady. Hope your knee is ok, dog is ok and how's the painting going. How's your daughter? And the puppy?!

Vee, hope you are doing ok. Don't think we've forgot you if we are quiet! I think we just don't pop on here as much as we used to!! Just pop in a message and we will be here! 
Samneedscoffee, hope we've been able to give you some useful advice! I know it's all scary times. But use us for suppprt if you need us.

All good here! Hubby is away in Canada, snowboarding with his mates. Been gone since last Tuesday, back on Thursday this week. It's been bliss :laugh:

Work is busy in many sideway ways, I'm trying to exercise more, as my middle spread tyre needs some serious attention but my mouth isn't getting the message. I'm trying to walk a lot more - less impact on my neck. I should have amazing legs by the end of the year!:wink:

Ive signed up for a Breast Cancer Now 10 mile walk, in May. It's in Oxfordshire and im doing it with my niece. 
Anyway, off to do some hula hooping - good for the waist!!

Take care ladies 

Caroline xx

Hi Caroline,

The old knees are behaving themselves today which tempts me to catch up on my house cleaning. I may resist the temptation, who knows!

Archie has turned into the kindest sweetest dog in the world - sometimes.  He still finds forbidden things irresistible if I have left them within fairly easy reach, I've just learned to be a bit more careful where I leave things.  He did have a chew on my new Christmas bobble hat. It was a Christmas gift, not a Christmas theme. He only made a small hole in the furry lining so it's still lovely and warm and wearable. He does now leave things before he can get to them if I see him and say No. He's just sneaky if I'm not around and he sees something that piques his interest. He waits eagerly whenever I'm cooking because I tend to drop things as I'm chopping etc. If it's ok for him to eat, for example a bit of safe fruit or vegetable I tell him ok and he'll go for it, but if I say no, wonder of wonders he leaves it for me to pick up.  It's only taken me five years to get to this stage! 

Bobbin goes from angel puppy to demon dog at the speed of light, as you probably well remember  from your recent puppy heaven. He was top of the class at his puppy training classes. He thought it was party time when we got there, all those lovely puppies to play with and constant treats being given. I don't think he's quite got the message that there isn't ALWAYS going to be a treat, though as he soon resorts to the unwanted behaviour when he doesn't get one. The classes finished last week, so my daughter has organised puppy playtime at her house, today, with two of the other classmates. She invited me down to watch them but I'm going to be busy doing something else.  The two boys who are coming were dreadful barkers when they first started and I'm sure they will bark for England in a new place. Archie is so kind to Bobbin when he attacks, relentlessly, but I wouldn't inflict three puppies on him.

My daughter is finally coming to after her Covid, ten weeks later, she is going back to work next week, so I will be providing doggy day care, as usual. We had a trial run yesterday, while she went shopping. She was gone a few hours because she could actually mooch round the shops without a mask on. She was dreadfully claustrophobic when wearing one.  (I'm still wearing one when I go shopping. I've bought the FFP2 masks that give the wearer some protection as well as those around them.) I was expecting to have a horrible morning with Bobbin doing his best to make Archie play and poor old Archie trying to escape him all the time.  I was, however, pleased to see that if I told Bobbin, quite sternly, to leave Archie alone, he would do so, for quite a few minutes and eventually he realised what was expected of him and I had quite a nice morning.  I took the dogs round to see one of my neighbours who loves animals but is totally housebound so can't have a dog of his own.  Bobbin sat quietly on his lap for half an hour much to my neighbour's delight, while Archie sat quietly by his side.  I suppose we can put up with a bit of bad behaviour at home when they are so well behaved outside.

The painting is on a hiatus at the moment, this baby's face is still not appearing so I'm leaving it for a bit, hoping that when I go back to it, the face will magically appear!  
Did you expect to get a short answer to your questions?  I'm sure you didn't.  

lots of love xxx