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

[LemonDrizzle10]

New thread - old one nearly full!

Pacli 6/12 done and dusted. Now off to the dcs school nativity (no rest for the wicked)

had a call with the breast care nurse today just as a catch up but we’ve scheduled in a pre op appointment for January. Eeek. I’m scared about surgery. Because it’ll be my first one. But will deal with the scaries in the new year. I’m a pro at bottling things up. Haha!

Well done @ememem84 I’m feeling the same about ec in the new year. We’ve all got you here on the surgery front.

Huge loads of bloods today, had extra for the liver specialist. Pacli 8 tomorrow.

it’s amazing how we adapt to get used to things.

Feeling a bit rubbish today. Got bombarded with phone calls from hospital (confirming pre op appointment and actual op date - next week) then one from breast care nurse with post op appointment and another from counselling service with appointment for next week.

Went to pick DCs up from school & take to swimming lesson - car has flat tyre. Pancake flat. Need mobile tyre van to come out. Don’t have any time this week or next week because of kids Christmas stuff and operation.

Plus herceptin has made all my muscles ache. And I’m tired. Especially of tyres.
🛞

Everyone's got a lot to deal with. @Littlecaf I hate anything to do with cars. I very unreasonably expect to only pay for petrol and tax/ins. I hugely resent anything else. And a flat tyre is all you need right now.
Sorry @ememem84 about your DH I hope him being signed off helps. My other half is sometimes amazing sometimes totally oblivious. Testing times.
@catonmat I had a CT scan very early on in my diagnosis that picked up loads of issues. At the time my DH was the only person in the room (not the BCN or the surgeon) who pointed out it would be unlikely for any adult to have a scan and them not find any anomalys. I had (amongst other things) thickening of my womb lining. 2 trans vaginal ultrasounds, a hysteroscopy and bipelle biopsy later... all benign normal changes. You are at the most alarming stage of the process as already mentioned but further checks are more standard than I ever knew.

Thinking of you all.

@ememem84

Having your heating paid would be amazing!

EC I was fine with. Wierdly I expected it to be worse because of what other people had told me who’d been through it.

i was asked by my oncologist about pregnancy sickness (did I have any and how severe) and whether I got travel sick. I had none and I don’t. So these are things to bear in mind.

the drugs they gave especially the steroids need to be taken on time. If it says not to take steroids after 2pm don’t do it. Because wide awake club!

woshing you all the best for EC.

Wouldn’t it?! I’ve got a meeting with the place on Monday just to check it out. Every little helps right?!

Thanks @ememem84 hopefully they can give me some decent sickness tablets as I do get bad sea sickness - even on a canal boat! It’s good to hear of a positive experience though.

After tomorrow, there are just four more pacli to go before the ec, you’ll be finished chemo before me I think but I’ve already been through surgery. Hopefully we will both be well on the mend by Easter.

Just looking in to see how you're all doing.
Well I'm awake because I have an mri tomorrow.

Thankfully, I'm not scared about it, though I don't suppose it'll be a laugh a minute, but don't these things play on your mind?
I feel like a hamster that's been thrown on a really fast wheel, and I'd like to get off now, please.

I've been reading through, trying to get an idea of where you're all at on your "journey" (hateful phrase) but I'm none the wiser really, as you all seem so knowledgeable.
Hope you're all sleeping soundly, no doubt I'll be back for a moan tomorrow.

Good luck @CatonMat I call it the disco tube, close my eyes and try to pretend I’m in a nightclub - without the crap dancing.

We’ve all been on very steep learning curves. It’s astonishing what you get your head around when you have to.

Chemo 8 of 16 for me today.

@CatonMat It's a bit like getting on a conveyor belt, and as @dancingwhilstfacingthemusic says it's amazing what you get used to. I'm due to start chemo on 30th December after a lumpectomy six weeks ago. It seems to me to be taking a long time to heal as I still have quite a bit of pain around the scar, and the bruising doesn't seem to be going which I though it would have done by now. It's not changed colour from the dark blue/black at all.

I agree with everyone that where you are now is probably the worst part, my brain was completely fried and I struggled, once you have the facts and some sort of plan it helps (although that in itself can be scary).

Hope the MRI goes ok, although I'm claustrophobic I didn't find it too bad at all, I just imagined myself somewhere nice for the duration!

just got back from my consenting apppointment for masetexomy next week. In at 7.30am, boob off at 10, home by 5pm. Sounds amazing. Like a spa day. Can’t wait. The BC nurse gave me a heart pillow and a fake boob. But actually feeling quite positive about it all- like it’s moving forward. But still can’t believe I’m doing this shit.

DPs bestie is coming round for a curry tonight. He’s got bladder cancer. At least I only have to worry about a losing a bit of flesh rather than an actual bodily function that might be removed permanently. We’ve been messaging throughout chemo comparing side effects - like this forum, it’s good to have company in this shitty journey.

I didn't feel sick at all on EC. But the cyclophosphamide (the C part of EC) made me feel really lightheaded and not well. I had morning sickness and am incredibly seasick - I never ever go on boats as I get too ill. So you may be fine 🤞🏻

I hopefully have my fifth (I think) pacli on Friday, currently I have a very sore throat and cold symptoms, no temperature but don't feel great, they are talking about doing throat swabs to see what's wrong with me. The doctor told me lots of their chemo patients are ill with viruses (it's that time of year) and have missed a treatment. I really hope I feel better and any swabs are negative, as I want chemo over with. The mouth soreness is unreal, so hard to eat, even with all the meds they've given me. I lost more weight last week, and I think I still am losing, as I have to keep hoicking my jeans up as they fall down 😕

Well I take back all I said about breezing through the mri.

I hated it.
Not been in that position for many a year, like a reverse cowgirl.
The bowel nurse came to find me, too, and the colonoscopy is on Sunday.
She bought me an envelope full of "gunpowder" as she called it.
I've been preparing by watching YouTube vids.

Lee Evans said he felt like a car being filled up with petrol during his.

Just found the new thread !
Quick re intro - Im 52 .. DM has stage 4 lymphoma and DF died of lung cancer in April
diagnosed with leaky heart valves and a heart aneurysm in May leading to more worry
Parents aren’t together and as only child and executor I’ve been dealing with dad’s estate and house sale is still going through .
Diagnosed with Multi focal high grade DCIS and grade 2 IDC Er/Pr - and her2+ . Had single mastectomy (no reconstruction ) in September and found five seperate her2 invasives although all under a cm .
Started chemo nab paclitaxel every three weeks for 4 cycles plus herceptin on 22nd November .
side effects were bareable but pretty grim .. nose bleeds , crusty nose , heart burn , stomach cramps , pelvic pain that felt like I was in labour , muscle cramps and bone pain then once they eased I was left with exhaustion and breathlessness .. I didn’t get any feeling of recovery at all .
Had a follow up either one of the oncologists today before tomorrows cycle .. As I’ve had neuropathy and breathlessness he said he’d reduce my dose but when he phoned pharmacy they said it was too late as they need 24 hours notice .. he said the other option was to delay a week ..I felt I had to accept round two at the higher dose which Im gutted about as I felt I could cope better with a reduced dose .. I’m wondering if I should have accepted the weeks delay as I’m just so fatigued and breathless

Wow @rockschooldropout that was dropped on you very short notice. I am two thirds through chemo and don't know what I'd have done in your shoes. Probably gone ahead with the normal dose now like you. It does feel like a train you can't always get off doesn't it? Dont get me wrong I am very grateful for all the treatment I'm getting but I sometimes feel it's happening almost beyond my control! Get through this one and have the next reduced? Hope it goes okay for you. What a year you have had. So sorry x

yep 2024 can just do one !!

Im sat here stressing over it .. plus im really annoyed that they are using some figures from a six month old echo too .. The technician did say on the day that she’d struggled to get all the figures due to my mastectomy scarring (left sided ) and she said it may be possible to use the readings from May .. I did have a wobble about it today as I’ve been very worried about my heart since Mays diagnosis but the oncologist said unless I’d had a heart attack in the last six months he wasn’t worried 🤣 I think I’m just feeling stressed knowing that I’m not fully recovered and also worrying as I had a reaction to the herceptin last time too ..
it really does feel like your on a runaway train doesn’t it !
We are so lucky to be in an age where we can have this amazing treatment but at the same time it leaves you feeling so out of control

@rockschooldropout. Hope what ever happens today you are okay. My heart kept racing days after my first EC. Onco sent me for an ECG again but it showed nothing. It didn't happen after session 2. Our bodies go through so much. Let us know how you go on x

I finally had my lumpectomy, sentinel node biopsy and wired biopsy last Wednesday.
Since then it's all gone to hell in a hand cart!
Sentinel incision started leaking last weekend, wasn't overly concerned so booked an appointment with GP for Tuesday.
Monday afternoon I suddenly developed excruciating pain in my thigh.
Tuesday morning at 7am DH took me to A&E because of the pain.
So spent all morning in A&E while they decided what to do with me, discussing it with my consultant.

So finally booked me in for a scan on Wednesday morning to rule out DVT and sent me along to see my consultant about my wound.
After much discussion she decided to pack the wound and see if it would heal from within cos a huge gaping hole had suddenly appeared.

So went home.
Wednesday morning, before we left for hospital for my scan my BC nurse phoned and tells me my consultant has been thinking and decided that packing wouldn't work and to visit them after scan appointment.
Ruled out DVT and diagnosed sciatica. All good, though still barely able to walk!
Saw my consultant who said it's a rare side affect from the surgery that they rarely see,didn't say anymore but said she thinks it will be better to go back to surgery to have the wound reopened and re-stitched.

She called on another consultant for a second opinion and both agreed that stiches alone wouldn't hold.
So Thursday was back on the ward for more surgery.
This was done under local and she stitched, stapled, glued and taped it, saying basically if this doesn't hold they don't know what will.
So, this morning it's started leaking again 😞
I know I should ring them but at this point I want to just say 'fuck it!'
My leg is slightly better but still unable to walk really, so the effort of going back to hospital and calling DH home from work again is not what o really need.
He's barely been in work for the past 10 days.
I feel such a burden and like I've done something wrong.
I've done absolutely nothing since yesterday so I know rationally it's not my fault but can't help feeling like such a huge bloody failure 😞

@drivinmecrazy What a nightmare. That is so unlucky (and definitely not your fault!).
I would though encourage you to get back in touch with your team at the hospital. I'm just nervous now as I ended up with an infection from my operation so your description of a leaking wound is setting off alarm bells. I hope your dh will help you get back to the hospital if need be!

@drivinmecrazy it's not your fault! You've been really unlucky. Take the time and rest you need to recover, it's your priority
@CatonMat prior to diagnosis, I was always quite chilled about MRIs - have had a few, mostly injuries and one gynae one. But my diagnostic one I found really traumatic and was crying. Had another a couple of months ago and I was so knocked out by chemo that I think I dozed off, but I was really anxious before it 🙁

I had my sixth paclitaxel yesterday, it was delayed by two hours while they spoke to the consultant to check it could go ahead as I'm just in the range of being neutropenic. I've got a tooth infection, and a cold, and feel rubbish. Have Co-amoxiclav and Metronidazole to take now, and the bloody pegfilgrastim injection to get my WBC back up before next time. Joy. Fed up now. Only six more to go 😬

Ultrasound on Monday to check what's happening with the lump, and appointment with my oncologist just before chemo next Friday for the results.

Love to all, it's a shitty, shitty time for us ...

@drivinmecrazy nightmare. I hope things are settling but echoing pp to get some advice if not. You’re really going through it.

@BatshitCrazyWoman it’s not fair is it? You’re having such a grotty time and sound as if it’s really running you down. Have you had to take pegfilgrastim throughout paclitaxel? I hope the bugger does the job for you. We all just want to get through this.

I’m finding more and more women in my immediate friends and acquaintances group with bc. Can’t believe how many - are others finding the same? Or some other kind of cancer needing treatment.

@dancingwhilstfacingthemusic no I haven't had to take pegfilgrastim whilst on paclitaxel up until now, because my neutrophils have been holding up (although declining week on week, like my haemoglobin...). Hopefully this will be the boost I need. I'm glad I raised the tooth thing with them (my dentist had prescribed amoxicillin, which I was taking but it wasn't helping), because they were concerned and absolutely thought it was important (I 'didn't want to make a fuss').

I'm on double painkillers too - ibuprofen and paracetamol together, plus the ABs ... I rattle!

On others being diagnosed with BC, earlier this year a woman I work with was diagnosed, but no one else in my circle, thank goodness.

It’s just pants. Really pants. We all deserve full recovery and a bloody nice sunny break.

Glad you raised the tooth thing as I expect with low immunity it’s more of a risk and also harder to recover from.