Cancer Support thread 88 - virtual rage room currently empty, virtual collective afternoon tea - all welcome!

[LemonDrizzle10]

New thread

@AllotmentTime Have you had reconstruction or reduction? I’m trying to work out what my options are likely to be. Like you, I have it in my lymph nodes.

@AllotmentTime the towel idea might work. If I'm not mobile enough to lay on one I could at least put one under my head.

@TopOfTheCliff sorry to hear your feet are still playing you up.

Hope everyone is as ok as can be.

Can I ask, has anyone had a bowel/small bowel resection? I'm being admitted the day before surgery. Should I assume this is for bowel prep?

Neither so far because initially they only found a teeny lump (plus the lymph node). However from surgery they found another lump plus DCIS so now they're saying mastectomy in future (though the plan seems to change so I take it all with a pinch of salt now!!). My surgeon has said I'll probably have a TUG reconstruction which is the thigh one.

@TopOfTheCliff I'm having Surgery 1st because I'm Her2 negative. My 1st tumour is 30mm but I haven't been told a size in my lymph nodes. So nice to hear your lymph node was doing its job so well! I love the way you put it!

@MyNamesGaryAndImAddictedToChips I had 80% of my colon resected. I was admitted on the day of surgery and did my bowel prep at home. I had a preop appointment with the anaesthetist the week before with various tests, blood tests etc. I recall my brother being admitted the day before surgery and doing his bowel prep and other testing in hospital. He lived a couple of hours away from the hospital so I think that’s why they did it that way. I live in the same city as the hospital so attending appointments on different days is fine for me.

@Remaker Thank you. I live quite close to the hospital, can get there in 15 minutes on a good day, so maybe different hospitals just do it in different ways. They have said I don't have to go for pre op and preadmission since I only did it a few weeks ago so I guess it must be bowel prep and blood tests.

I'm currently booked to have a lumpectomy and reconstruction mid August. The mri found a something on the right side too so that needs a biopsy. They're doing both sides anyway to make them look even. Then radio therapy and tamoxifen.

I'm having a glum tired day. Part of menopause for me was awful tummy issues which seem to have returned with dropping hrt. Though who knows maybe it's something else.

Was freaked by a sore lump in my arm pit yesterday and had to tell myself that happened often before.

The bloody weather doesn't help!!

I’m going well so far after my surgery on Wednesday. My lovely surgeon came in on Saturday morning to tell me the pathology results. He said it was an excellent response to the chemo, only a tiny 5mm bit left. Lymph nodes clear. I am feeling very up and down I have to say. But I think I’m getting there.
Got a fair way to go yet but I feel a sense of determination again today.

Waiting for the lymph drains to slow down or dry up. They seem happy to keep me in for a bit longer. Will try and find out about nurses in the home tomorrow and if I’m covered. Then can work out discharge.

@Ikeameatballlunch sorry you are having a glum day. Tummy trouble doesn’t help. Anything you can do to improve it?

I hope everyone has a reasonable Sunday. X

@Ikeameatballlunch I agree the weather doesn't help at all. I'm quite meh today - might go back to bed for an hour tbh, even though I just went and got dressed. I think my dad's coming for a cuppa but he can always come later.

I really want to crack on with something but just no go to do any of it 🙄

Meh here too. I spent a night away dogsitting my DDs fur baby then went to help at a bike event. I was sitting at a table checking people in for a few hours but no walking. Now I’m home and my feet are really sore. They are no better after 10 days of medication. I do t now I can go back on full dose Cape like this. But maybe they will have healed by Tuesday when the nurses phone again.
Fingers and toes crossed

Hi all, adding to the general 'meh' feeling. Have just hit day 10 of my first TC chemo infusion. Day 1 and 2 were great (wondered if I'd actually been given anything). Day 3 went slightly downhill, then days 4-8 were awful body aches requiring paracetamol every 4 hours to not feel completely shit. No taste either. Day 9 somewhat better. Now, Day 10, body aches have finally subsided, only to be replaced by a flooding period with accompanying back ache. Great. I though one 'advantage' of chemo would be no periods. I guess this one was already coming and decided to be super heavy as a final hurrah.
Anyway, feeling a bit down also about my chest seroma just not improving. I don't think getting it drained is a good idea during chemo. I bet any poking would just give me an awful infection. So, I am putting up with it. But it is starting to look like a small third boob...onwards I guess.
Good wishes to all. Don't let the bad weather get you down too much. I am trying to spin it to myself as an excuse to find a cosy corner of the sofa and read.

Sorry to see your feet are still sore @TopOfTheCliff . Are they likely to get worse, do you think, if you have the full dose of Cape?

I went back to bed for a bit & have been slightly more productive the past couple of hours. The gingerbread house is ready to varnish with the rest of the set, and I'm cooking a gammon roast. That'll be it for today though, other than a bit of crochet or my book later on.

@FairyWren7 good to see you're doing well after your surgery!

Sorry to hear so many of us are struggling today. Sending healing thoughts to your poor feet, Top. My DDad has recently been diagnosed with MPN and before diagnosis his feet got very sore and ulcerated. He was so miserable and seemed to age several years in a few weeks. Everything is much brighter for him now he’s responding to treatment and they’ve healed, so I completely get how debilitating it must be for you.

I’ve had a good day. Baked my friands (delicious but impossible to extract from the tin), did masses of tidying and managed a slow 5k run though it was a struggle. I feel ok on Abemaciclib in general but exercise has got massively harder. Bit depressing as I had been feeling I was regaining fitness and I’ve gone backwards, but hey ho. Oh, and I’ve paid the deposit on a holiday for autumn 2025. Part of me thinks that’s madness as I might be dead by then and who knows how DH will be faring (Parkinson’s disease). But I’m seeing it as an act of defiance and hope.

Ugh. Sorry so many of us are having a crap time. I've got a stinking cold and I've somehow knackered my back. Summer holidays not going well in this house. Eleven days till chemo.

@dotty2 tell us more about the holiday. Good for you for booking it.

@isaxx I'm grateful you posted because even though I'm whining about having to have my coil removed before chemo, it hasn't occurred to me that I need to actually have something in for periods. Haven't had one for about four years! I hope you feel better and the seroma improves.

@TopOfTheCliff toes crossed that your toes are better 💐

@lucysmam that sounds like a very productive day! Pic of the gingerbread house when it's finished, please 😊

@FairyWren7 glad you've had some good news. Hope you're doing okay. Watch out for the post anaesthetic mood rollercoaster if you haven't had it yet, caught me and others out in the past!

@Ikeameatballlunch hope you are feeling better and the weather wherever you are is better tomorrow!

It’s a new holiday cottage on Harris, which is an island I love, that’s being built by a couple who own another gorgeous place I’ve stayed in. I’ve been watching the build on FB and it looks amazing. They have just opened to bookings. Summer 2024 sold out instantly and also, it’s only for two and realistically, a week there will be at least 9 nights away which feels too long to leave DD2 next year. But by 2025 she’ll be 18 and may well be off at uni.

Ooh @dotty2 that sounds wonderful. I spent one night on Harris last year when I sailed into East Loch Tarbert under the bridge in Scalpay Sound. It was a delightful place but I never got to see anywhere further inland and long to go back there. That’s the trouble with a circumnavigation it just opens up more areas to explore. Maybe I will go back with my bicycle. I think we need to plan ahead to put some markers down for our future. I find it hard to plan more than a couple of weeks ahead at the moment.
I hope this evening is better for all. I’ve got some chicken curry leftovers to eat for supper.

I think the weather has a lot to do with feeling meh…it certainly does in my household! Although we did manage to get the kids out for a quick stroll before the next lot of rain. @dotty2 well done on your 5k…it’s something I’d love to be able to achieve. Even before I was ill I never managed it. And I’m intrigued by the sound of the holiday cottage, it sounds fabulous.
I have a throbbing left tit and a badass scar. I can’t actually get over the size of the scar (it goes from under the boob, right under the arm onto my back) but will all be hidden by a bra strap! I’m hoping the pain doesn’t increase though.
Here’s to a better day tomorrow for people!

So tomorrow I’m meeting my new consultant and hopefully learning the treatment plan. Feeling quite apprehensive. It’s two weeks since my last ultrasound and during that time I’ve not forgotten about it exactly but I’ve got used to carrying on as normal despite my diagnosis. Tomorrow I think reality will hit.

@Florabritannica I feel exactly the same about meeting my new surgeon tomorrow and finding out the exact plan for the next surgery. This whole thing has so far been long periods of waiting with nothing happening and then short bursts of low level panic and action. Hope it goes well for you tomorrow.

@MyNamesGaryAndImAddictedToChips Thank you! Yes it all feels rather phoney war at the moment. Good luck tomorrow.

Phoney war, yes! That sums it up pretty well.

@dotty2 sounds amazing. Something to look forward to.
@MyNamesGaryAndImAddictedToChips @Florabritannica best of luck for getting a plan that gets things moving in the right direction for both of you. The phoney war phase is very wierd and difficult.
@Whattodotomorrow scars can be quite a shock but, although mine too are still very visible, one has to trust that they will fade.
I was having a so so day but now I am totally freaking out about lymphedema. Any experiences? Just noticed some swelling around my elbow. I have been monitoring my arms and even my partner confirmed my right elbow looks swollen. I am 5 weeks from surgery. Has anyone else had this and it just be temporary? I will ask the physiotherapist I am seeing on Tuesday already (for cording), but just seeking others' trajectories. I had some elbow swelling immediately after surgery but it went away by the next day. Then, around week three post op mild swelling around thumb side of hand. That too was gone in a day. Now, the elbow swelling again. Damn. Is this the beginning of the end so to speak?

@isaxx it is most likely post surgical swelling. I had a lot of arm swelling when I was sailing last year. I went for an assessment and the nurse took readings and measurements and concluded as my hand wasn’t swollen and the swelling came and went it was just post surgical swelling. Let your specialist nurse know and they can arrange to look at you. Mine settled with rest but comes back if I am very energetic.I don’t need a compression sleeve.

@FairyWren7 I think you asked me about my username: it's from the fab Bob Mortimer - a phrase used by an obnoxious character called Train Guy he used to do on Twitter occasionally. I explained it once before on the thread to the lovely @Thereisonlyoneofme , who we haven't heard from in a while but I still do think of her.

DP & I had a short break to Northern Ireland recently. I recommend it if you're looking for a peaceful, slower-paced break, and no travel insurance issues!

Best wishes to everyone for a good week ahead 🙂