Cancer Support Thread 96: It’s nearly Christmas - get the sprouts on.

[LemonDrizzle10]

New thread - old one nearly full!

@BatshitCrazyWoman @somewhereonthe517
thank you.
I’ve been told 6 rounds but all that will change if it’s in my central nervous system. I’ve had the symptoms all along but everyone has been saying “oh something is pressing on a nerve” and the consultant refused to entertain it when I saw her for the first and only time last month.
For some reason this time she’s listening and at least doing a scan to hopefully rule it out. My prognosis will change massively if it’s present so now it’s being taken out of my hands I’m trying to forget about it until I need to. There’s enough to think about without that. I was just scared they weren’t listening. And yes, I did Google but I’ve had this since November, loads of tests, no diagnosis and only saw a consultant in January. So Google was my only source of info. I did stick to the “good” sites but even so!
I was sitting in the waiting area at our cancer centre yesterday and you can’t help overhearing conversations. There was a guy with possibly his son and the “Dad” had just been diagnosed with prostate cancer at 79. The younger guy just wouldn’t stop talking. Statistics and platitudes. It was making my brain hurt and it made me realise how different the experiences are for those who it happens to and those who support them. Obviously everyone is different and he might’ve been comforted by the intense bandaging but I just wanted to yell “shut up!” let the poor guy sit and digest it for a minute, this is huge!
I think only those going through it truly understand.

Hi @Toarrie

@Toarrie & @OhThatsJustGreat sorry to see you here but you will find loads of useful information and support. I find it pretty much the best and only place to say what I'm really feeling and thinking.

I had r3 of EC yesterday but it was a bit of a drama as the clots in my arm are causing quite a lot of swelling so had to be checked out, poked, and prodded before they would give the go-ahead. I was there for nearly 6 hours instead of my usual 4 which knackered me, and the old steroid insomnia kicked in pretty much straight away so I've had about 3 hours sleep.

There's a major project going on at work involving a very demanding American who can't understand that I'm not firing on all cylinders - and is using ghastly (to me) terms like "let me know if you want to circle up at that time". I think he's talking about a Zoom meeting, and I ain't doing one of those!!

Now it's just a question of waiting for the grim four days to set in, but I'm now halfway which feels like a major step.

@ememem84 Really hope your op goes well, and you don't feel too rough when you come round.

Hello @OhThatsJustGreat and @Toarrie sad that you have to be here but this is such a supportive corner of the internet.

@somewhereonthe517 Kate finishing chemo with the added soft focus social media post was very difficult for me too - I was just about to have my mastectomy. Whilst I’m delighted she’s through chemo, not all of us get to come out of it looking like a fairytale - which I’m sure her life wasn’t when going through what she (& we) endured. I know she was trying to do a “hope” thing but it was too sugar coated for me to deal with.

@frostyfingers one more done. You’re having more than your fair share of troubles but you’ve done one more. I really think we are all due a massive lottery win to balance up the shit stuff. Can someone take a bit of pressure off you with this client? It must be so tempting to tell him to FO as really, the situation we are all in does give an entirely new perspective on existence. I’ve had to hold back on ripping strips off my bro who was telling me about his awful time with a dodgy mole which was removed with no further treatment needed. I get it but seriously, read the room mate! Spot on, @OhThatsJustGreat

Welcome to the newbies from a “twice round the block” veteran of the threads. This is a great place to come for comfort at any time of day or night. Someone is usually around to hand hold or sympathise.
@breastcancerpanic I just wanted to say I found EC much harder than docetaxel. That is different, hard in other ways, but not so grimly exhausting. I had a really bad time on round 3 EC with severe migraine and vomiting as I had got dehydrated I think. I rang the ward, wept down the phone, and was called by the kindly old oncologist who looked after me. He was over 70 but still treating BC ladies part time and was such a treasure. He listened to my tale of woe, reassured me I was doing really well to have got so far, and reminded me that each time I had reached the lowest point around day 9 then picked up again before the next dose. He reminded me just to get through each day hour by hour, to eat and drink a little, to rest and take all the pills to relieve pain and sickness. He was of course right! I survived, had every dose in full without any reductions and got a total pathological response at the end of it. You can do this! And you can be very proud of yourself for your fortitude and ability to endure something so dreadful. Just keep going! Sending hugs x

Surgery. Completed it mate.

went down about 1. Back on the ward around 430. Surgery was 2.5hrs.

I was nervous as anything. But it’s done now. Feeling achey. But ok.

DH has just left me to go take the kiddos home from dparents.

have had soup. Veggie curry. Ice cream. And tea. Lots of water.

seen surgeon. He is happy with how it went.

now onto recovery. And rest.

@breastcancerpanic I had docetaxel - but it was with carboplatin - and I can’t compare to EC. BC nurses said it was “robust” so I don’t think it’s a walk in the park - I usually got 2 days grace post infusion then days 3-11 were rubbish with probably day 5-8 the worst thing I’ve ever felt. But it did pass as all chemo does.

@ememem84 well done! Now rest and heal.

@OhThatsJustGreat all the niggles are such a worry and then you have scanxiety to top it all off! I will never understand the whims of oncologists - which is probably why I’m not one! I had the most awful constant arm bone pain, with all the symptoms in all the leaflets but nobody would listen to me. It was like the breast care nurses rolled their eyes everytime I phoned…. I had one headache while on tamoxifen and they’ve referred me for a brain MRI….i didn’t even ask for it!

Sorry to see you here to the newbies, it’s a nice hug of a thread though. Definitely kept me going through my dark days. No question is a silly one so ask away.

Nice one @ememem84 Rest up and recover!

Well done @ememem84 Glad the catering is good. Hope you get a decent night.

Hi all, I’m another newbie. Been lurking for a couple of days but only read up from the last couple of pages sorry so still getting to grips.

10 years ago I was treated for bc; chemo first, then skin saving mastectomy with immediate reconstruction followed by radiotherapy. Was the hardest thing I’ve ever been through and said I couldn’t ever do it again... Then in October last year I noticed a blister like lump close to the surface and the skin around my scar tissue started to scab over.

Took 2 weeks to get an appointment to see the GP, then another 2 weeks to get a hospital appointment. Long story short it’s back but in the mastectomy flap/skin and in some of the nodes behind the breast bone. In the time since the first biopsy I’ve had lots more lumps pop up all over and the ones they’ve biopsied have gone back positive too. So it’s back to chemo, then full removal of the reconstruction and skin from my collarbone to the bra line all has to go, followed by radiotherapy.

First round of chemo was 12 days ago and it’s been bad but not quite as bad as last time. But they gave me a different chemo drug first last time and this time I’m only having the second drug. It’s been tough and I’m already dreading the next round and not sure I’m going to cope with 6 in all.

Still got my hair for now but it’s going to go pretty soon I expect. They said 2 weeks which is when it fell out last time. Got my hats ready, I didn’t get on with a wig last time.

I’m most worried about being flat. The surgery I need to have sounds pretty horrendous. Or ‘extensive’ as my breast consultant called it. The plastics consultant said they’d reduce the other breast so I wouldn’t be so lopsided. Not sure how I feel about that either. For now I’m just focusing on getting through chemo and getting the cancer out of me.

Anyhow I just wanted to say hi and hopefully chat to others going through this too for some mutual support.

Hi @gillybean2 I’m so sorry you find yourself in this situation again. We all get it, wish we didn’t have to, and it’s a safe space for support.

I’m off for my wig fitting today. Hair is thinning and messy. I’d like the option although I’m happier in scarves and caps.

@gillybean2 you are going through so much - sending you lots of support.
I just wanted to say something hopefully reassuring about my experience of 'going flat'. I had an immediate reconstruction (with implant) and I was feeling good about that. But then due to an infection they needed to urgently remove the implant so I'm now flat on one side. I've been surprised by how okay this feels - and I hope it will for you too. I see myself naked in the mirror and think everything looks okay even with the asymmetry (I asked them to not leave lots of loose skin, which I think has given me the 'neat' look that I feel okay with). And then I just put on my bra with the prosthesis in and get on with my day. I'm avoiding some of my tops, but otherwise just wearing my normal clothes and I don't think people would notice a change. (Though dh says I am slightly unbalanced - at some point will get another fitting and see if we can get an even closer match).

Thank you @dancingwhilstfacingthemusic @TopOfTheCliff and @Littlecaf for the experiences and solidarity.
I started to turn the corner yesterday evening (day 6 I guess) and had my first full night's sleep last night. I think I am slowly on my way back to the surface! The problem I have with EC is definitely the nausea - I know it is supposed to be controlled with meds but I am on the good ones (I think) and still feel sick. Much less sick today though.
Sending everyone lots of hugs for this nightmare of a time.

Home from hospital. DH has installed me on the couch with nurse catface.

phew.

@ememem84 Glad you've made it home, I hope your nurse is being suitably attentive!

I'm feeling really down today, this chemo has hit harder and faster than before and I'm sad to see so many new people here too, it really is a shitty disease. Everyone says "oh you look well, you're doing so well" which is meant to be encouraging. I think it's partly a problem of my own making, putting on a brave face possibly for my sake but for theirs as well and now I don't feel I can say (except to a very few people) actually I'm having a tough time and feel awful. It's been 6 months since diagnosis and it's looking like another 6 months of treatment to go which is depressing, and on top of that it's probably another year of it for DH too.

My DH was so tactless the other day, but I let it ride as he's so ill - when the issue came up about my blood clots, swelling, low white cell count and my worry that they're going to delay the treatment he said and I kid you not "oh well it's not like you've got cancer, now you've had the op". I know it wasn't quite meant like that but still. I said if I didn't have cancer I wouldn't be having the chemo, and left it at that, but I admit I was hurt.

Sorry to be so down, but I know you lovely lot get it.

“And then I just put on my bra with the prosthesis in and get on with my day” that is exactly how I feel about being flat on
one side. My biggest tip to anyone is to get yourself properly fitted with a good quality prothesis. I bought a couple of M&S cheapies to tie me over post operation but then went to a specialist and bought a Trulife one which is amazing. Can’t feel it at all. Apparently I’m supposed to get one from the NHS but nobody has mentioned anything!

@gillybean2 The feeling of overwhelm is horrible when facing months of treatment. The only wayi git through was breaking it down into 'a quarter done' '2 ticked off' etc. Little wins too..so a decent day off the sofa or enjoying a treat food wise helped. @ememem84 Glad you are home and nurse catface on the job! Rest up! @frostyfingers hmm... your DH should probably know better under his circumstances. I mean why do people say odd things. My DH will get a spade round the head soon..he's been pretty good but if he keeps repeating me in a shocked Scrooby doo manor .. DH: "How long have you got those tablets for then?' ME: "Two years" DH: "Two years?!"!! and this is in response to every question/answer. If I wasn't sad before .. I am after a conversation with him!! They sometimes forget to reign it in I think! Grit your teeth @frostyfingers ..sending solidarity x

@frostyfingers people just don’t know what to say and end up making us feel worse. To the “you look really well I tend to say “I’m using a body double”, or, “I feel crap but my dh is looking after me well”.

I totally get what your dh was saying. I have to be frank with friends now, as they’re saying, “you’ll soon be finished and all behind you”. Nope. So I tell them “I hope so, but I need you to know x and I need you to say / do y”.

@ememem84 I adore nurse cat face from afar. I hope you’re suitably cared for by her.

@Littlecaf I really like that phrase too. I bung in my foob (faux boob) and crack on. Mine is a very nice one fitted by the bra lady at the hospital. I had to chase an appointment. I also was prescribed an absolutely giant post surgery bra which, to be fair, is smooth, comfortable and looks well under clothes. As a pick me up, I went to bravissimo and got fitted with a red, lacey post-surgery bra with pocket for prosthesis. They also do them in white. There’s not a huge choice out there but it’s nice to have something frilly. I’m interested to see what might happen to me at the airport tomorrow if they put me in the body scanner (although we have special assistance booked).

Just been for my wig appointment and it went well. I have one on order, paid for by my nhs voucher. I was really moved to see posters for the Little Princess Trust, the charity I donated my hair to pre chemo (14” of it!). The wig specialist told me about the process of providing a real hair wig to an under-24 and it was such an uplifting and moving thing to talk about.

Best nurse.

am now in bed. Didn’t sleep well last night. Hospital bed and have to sleep propped up and drain and had oxygen yesterday.

I had one of the school mums say to me the other day I was “lucky” to have a “free boob job”

Nurse cat is the best. Hope you sleep well in good tranches at least.

Speechless at that graceless school mum.

Just look at those little biscuit makers poised for action 😍

Gorgeous nurse cat @ememem84 Cats make the best comforters 😻 I hope you've been able to get some sleep. The school mum comment- I think I would have said 'do you want to swap - you can have the cancer and the free boob job then?' Bloody stupid woman.

I get so fed up with people saying I 'look well'. Because I don't! Don't lie to me. And yes, @dancingwhilstfacingthemusic I'm exhausted with the treatment so far, and have three weeks of radiotherapy to come (probably starting in about a month), so it may be 'nearly over' but it'll always just be there in my life. And I already know I'm not the same Bats as I was., why would I be?

Slept better than I did in hospital. Hoorah. Still not a brilliant sleep. But better. So I’ll take it.

Oh help! I really need a handhold right now. I had early BC 5 years ago, no lymph node involvement and didn't need chemo just lumpectomy and RT.

I went for my final and 5th mammogram last week and the clinic have asked me to go back for a second mammogram because 'there's some distortion in the breast tissue'. The nurse thinks that it was most likely caused by my boob being incorrectly positioned during the mammogram?

The breast nurse also told me my mammogram was rated as only being a 2 on the BI-RADS score, which would usually be classed as 'normal' and not require you to be recalled. But because I've had early BC they want to be extra careful.

But obviously I am now in bits and feel sick with nerves that there is something wrong. My next mammogram is a week today which feels like forever away.

Has anyone else had the same thing happen to them? Any reassurance will be so welcome.

@gillybean2

Sorry to hear you find yourself back here. I know exactly what you mean when you said after treatment you didn't think you could go through it all again.

Do you mind me asking what type of bc you have? Is it the same type as before?

I had triple negative.

I haven’t had the same as you as am going through BC now. But I just wanted to say that we are here. We are here for listening ranting support whatever you need.

it’s great that the team are being extra careful. Take that as a reassurance. And I hope all turns out well for you. Xxx